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FAQ's

IDF ePHR

Can I access my IDF ePHR account anywhere?

You can access your IDF ePHR from your computer, or download the app to access your information anywhere from your smartphone or tablet.

Can my IDF ePHR account sync with Microsoft HealthVault?

Yes, you can sync your IDF ePHR with your Microsoft HealthVault account to access information from various labs, pharmacy systems, personal health devices and health resources.

How can IDF ePHR prepare me for unexpected emergencies?

Tracking information in your IDF ePHR can help you in unexpected emergencies. By creating a “Health Snapshot” profile, you will have all your health information in one place in the event of an emergency.

How do I become a part of PI CONNECT?

An added benefit for users of IDF ePHR is the opportunity to be a part of research by consenting into PI CONNECT, the IDF Patient-Powered Research Network. PI CONNECT connects the information you enter in your IDF ePHR, the online personal health record for patients with primary immunodeficiency (PI) with the United States Immunodeficiency Network (USIDNET) patient-consented registry, which contains clinical data on several thousand patients with PI. Bringing together this information through PI CONNECT gives researchers valuable insight into the patient experience.

Learn more about PI CONNECT

How should I set up my account to manage my family's health with IDF ePHR?

You can create records for each member of your family. The first record created should be the record for the patient with PI. Then you can create additional records. One person holds an IDF ePHR account, and records for many people can exist within that account.

I used the previous IDF eHealthRecord. Will my information be transferred to the new system?

Yes! If you already have an IDF eHealthRecord account, don’t worry—all your previously entered information will be in your new IDF ePHR account. It couldn’t be easier!

Is my information safe with IDF ePHR?

Rest assured, your information is safe in IDF ePHR. We use the latest health information technology to ensure your information is secure, including adhering to federal and state regulations, and maintaining comprehensive standards, frameworks and security controls.

As IDF’s vendor for the IDF ePHR, Get Real Health’s InstantPHR meets the security standards of HITRUST (Health Information Trust Alliance). HITRUST is the most rigorous and trusted standard for health information. There has been no security breach of InstantPHR, and there is continued monitoring of security controls over time to ensure compliance with HITRUST standards.

What are the system requirements to use IDF ePHR?

IDF ePHR works with all standard browsers: Internet Explorer, Firefox, Safari, Opera, and Chrome. We recommend that you use the latest version of your preferred browser. IDF ePHR requires that you enable JavaScript and cookies. Your Internet provider’s service fees may apply.

What does IDF ePHR cost?

IDF ePHR is free! There is no cost to you or your family members. As an online service, connect-time charges from your Internet access provider might apply.

Apps and devices that connect with Microsoft HealthVault are provided by third parties. Many are free to users, while some have charges. You are not required to have any third party applications to have an IDF ePHR or HealthVault account. Please read their terms to decide which apps and devices are right for you.

What if I have questions about IDF ePHR?

We are here to help! Simply e-mail info@idfephr.org or call 800-296-4433.

What is IDF ePHR?

IDF ePHR is the electronic personal health record developed by the Immune Deficiency Foundation (IDF) for patients with PI. It allows you to store, track and share your health information.

What type of information can I track?

There is so much information you can track with your IDF ePHR! You can:

  • Track medications, supplements, diagnoses, symptoms, infections, allergies and more
  • Record Ig infusions
  • Track goals, set reminders and notifications
  • View your progress in charts and graphs
  • Create, share and print reports
  • Utilize chronic disease management tools and keep track of all conditions
  • Download medical records through Blue Button+ from participating providers
  • Sync with Microsoft HealthVault to access information from various labs, pharmacy systems, personal health devices and health resources
Why should I use IDF ePHR?

Like many patients with PI, you probably keep track of large quantities of medical information. IDF ePHR was designed specifically for patients with PI, so you can streamline how you manage and organize your health information—anywhere, anytime. So it’s not a chore—it’s simple and intuitive.

Plus, you can set healthcare goals and use personalized care plans to improve your health, and you can make medical visits with your healthcare provider more beneficial by sharing your organized, comprehensive health information from your ePHR.

PI CONNECT

Is my information safe with PI CONNECT?

Rest assured, your information is safe in IDF PI CONNECT. We use the latest health information technology to ensure your information is secure, including adhering to federal and state regulations, and maintaining comprehensive standards, frameworks and security controls.

What is PCORnet?

IDF was approved for a funding award for PI CONNECT from the Patient-Centered Outcomes Research Institute (PCORI). PI CONNECT is a part of PCORnet: the National Patient-Centered National Clinical Research Network. PCORnet aims to advance the shift in clinical research from investigator-driven to patient-centered studies, giving patients “a seat at the research table.” PCORI envisions PCORnet to be a secure, national data network that improves the speed, efficiency, and use of patient-centered comparative effectiveness research. PI CONNECT along with all networks in PCORnet will form a new national resource that aspires to boost the efficiency of health research.

What is PI CONNECT?

PI CONNECT is the IDF Patient-Powered Research Network. PI CONNECT connects the information you enter in your IDF ePHR, the online personal health record for patients with primary immunodeficiency (PI) developed by the Immune Deficiency Foundation (IDF), with the United States Immunodeficiency Network (USIDNET) patient-consented registry, which contains clinical data on several thousand patients with PI.

What is PI CONNECT?

It’s a great way for you can be a part of research! Bringing together your information from your IDF ePHR through PI CONNECT gives researchers valuable information about the patient experience. You can also join the research conversation in the discussion forum.

Medical Treatment Questions and Living with a PI

How and why does my Idiopathic thrombocytopenic purpura (ITP) play a role in my CVID?

CVID is a complex immunodeficiency disorder that paradoxically frequently also has components of autoimmune disorders as part of the total picture. Your ITP is a disorder in which the body makes an immune response to its own platelets leading to their destruction and a bleeding tendency as a consequence. It is believed that the immune defects in CVID include problems with immune regulation and these defects in controlling and directing the immune response contribute to the self attack.

The autoimmune component of CVID can also include arthritis, hemolytic anemia, kidney disease, inflammatory bowel disease and other conditions in which the immune system is misdirected against different parts of self. The management of these autoimmune components can often make the treatment of CVID very complex, which may require several medical specialties working together.

I am 62 years old and have CVID and Cellulitis. My family doctor has been taking care of my flare-ups for years. He is getting frustrated because he cannot fix me and does not know what to do with me anymore. I have had three flare-ups this year and have taken six to eight weeks of antibiotics to kill it. For 14 years I have been doing great and the cellulitis was controlled, but now it is coming back more often. My doctor recommended that I see a hematologist. I suggested that I go to an infectious disease doctor. What specialty would you recommend?

We asked someone who is a specialist in immunology and infectious diseases at the National Institutes of Health for his general management advice. His response follows.

“Management of infections in patients with immune deficiencies can be difficult and often requires both expertise in the specifics of different types of immune deficiencies, as well as special knowledge in infectious diseases. The patient should seek to involve an infectious disease expert in the care decision process.”

“It is difficult to provide more detailed advice, but I can make some generalized statements. It would be important to know if cultures were taken, what pathogen was identified, if any, and what the antibiotic sensitivities of that organism were. Ceftriaxone is a broadly active antibiotic, but it does not treat everything and it will only work if the microbe is sensitive to it. While sometimes there is only an intravenous antibiotic that will work for a particular infection, it is important to see if one of the very potent, well-absorbed oral antibiotics might work. The reason for this is that there is often less cost and fewer problems with taking an oral antibiotic for a very long period of time, if that is required to eradicate an organism.”

“Also, as patients with immune deficiencies get into their 60’s or 70’s, the degree of immune deficiency can sometimes change depending upon the type. It is important to re-assess the degree and extent of immune deficiency to see if there is a change and if that change requires different treatments that might include different prophylaxis to reduce the frequency of infection. I hope these general comments are helpful.”

I am 65 and have CVID. I recently read about the new quadruple dose flu vaccine. I am wondering if it is ok for me to get this new vaccine?

There is no possibility of this vaccine causing the disease as is theoretically possible with the FluMist type of live virus vaccine. The early reports suggest that mild side effects do occur more frequently but this must be balanced by the opportunity to get a better vaccine response from the higher dose vaccine than the standard vaccine. As always, you should consult with your personal physician before deciding which flu vaccine to obtain.

 I don’t know anybody else who has PI and would love to talk with others who can understand what I go through! I know IDF has patient meetings and support groups, but I live hours away from even a small city, so there hasn’t been any opportunity to attend any of them. Any suggestions to help me not feel so isolated?

An easy and convenient way to connect with others in the PI community is to join IDF Friends. It is. You can find others who share common interests and experiences with you, plus, it is available around the clock and requires no travel!

Something you might really enjoy is the Discussion Forum, a section of IDF Friends that is designed for you to share experiences, offer support, ask questions, and most importantly, connect with others who are affected by PI. There are hundreds of topics open to choose from and participate in, so why not give it a try.

It is private and easy to sign up, so join over 1,500 members in the community. CLICK HERE to start exploring IDF Friends.

Additionally, if you want to talk directly with another patient, you might be interested in the IDF Peer Support Program. This program connects patients and family members to trained volunteers who share similar relationships to primary immunodeficiency disease. They are patients and family members of all ages, and they are ready to listen to your cares and concerns; offer skilled emotional support; and share their experiences and understanding.

This is a free resource, and you can take comfort in knowing your communications and correspondence will be held in the strictest confidence. To participate, just contact IDF at IDF Peer Support Program or 800-296-4433.

I have CVID and I am going to have knee surgery. My orthopedic doctor is concerned about my immune deficiency. He told me to do some research. Do you have any information that I can share with my surgeon?

After discussing this with several immunologists, their combined suggestions included these ideas.

  1. Ask your immunologist if he/she has a relationship with an orthopedic surgeon. It is important your surgeon understand your primary immunodeficiency and both your immunologist and surgeon work together as a team.
  2. Have your surgeon call the IDF Consulting Immunologist Program at 877.666.0866. The IDF Consulting Immunologist Program offers free physician-to-physician consults; consults or second opinions on issues of diagnosis, treatment and disease management; and access to a faculty of recognized leaders in clinical immunology
  3. One immunologist gave the following advice: “postoperative joint infections (usually Staph) are not caused by the microbes that are most often the problems for patients with antibody deficiencies (CVID and XLA) (S.Pneumoniae, H.influenzae type b, etc.). We advise our surgeons and dentists that the patients with selective immunoglobulin/antibody deficiencies who are on appropriate IgG replacement are not at increased risk for postoperative infection. This might be different for some individuals, for example anyone with a low white blood cell count, low T-cells, or severe malnutrition.”
  4. Another immunologist suggested putting patients on antibiotics as well as the dose of IVIG before surgery. Some infections could be a consequence of antibiotics, so each case must be evaluated on an individual basis.

Although these recommendations are not based on any large studies, they seem to be reasonable and cautious. It is strongly recommended that any surgery should be discussed with your immunologist.

I have CVID. I am deficient in all areas but the worst is IgG. Is there any chance that taking vitamins or herbal supplements (i.e. garlic etc) could be effective or most likely not helpful in this area?

There is no evidence that herbal or vitamin supplements are effective in reversing CVID. In general a good balanced diet should provide enough vitamins, but many physicians recommend taking a multivitamin tablet daily as well.

I have heard about several outbreaks of Whooping Cough. This seems to be a serious respiratory infection. As an elderly patient with CVID, is it vital that I have this booster vaccine, and is it safe for me to receive it?

Whooping Cough, known medically as Pertussis, is a highly contagious respiratory tract infection. There have been several outbreaks during the past few years.

This prompted the Advisory Committee for Immunization Practices (ACIP) to update their recommendations in 2010. They suggest that adults who are 65 years and older and are grandparents, child-care providers, or health care providers who have close contact or anticipate close contact with an infant under the age of 1, and have not previously received Tdap (the vaccine that protects against diphtheria, tetanus, and pertussis [whooping cough]), to receive a single dose of Tdap.

So should you be vaccinated? That really depends on your situation, but since this is not a live vaccine it would be safe for a patient with CVID to take.

I have not traveled outside of the United States since I was diagnosed with CVID a couple of years ago, but I am planning a trip abroad. What precautions should I take prior to traveling? Should I get the suggested vaccinations? Will they even help someone with CVID?

We are happy to hear that you are well and going to be doing some traveling! The recommendations will vary according to where you are traveling and the season of the year that the travel is planned.

You can always go the website for Centers for Disease Control and Prevention to learn about endemic infectious diseases in various regions of the world and the vaccines recommended for travelers to those areas. However, patients with CVID almost by definition fail to make a reliable antibody response to most vaccines so that route of protection is probably not going to be useful.

Antibody deficient patients such as those with CVID are traditionally treated immuno0globulin to replace the antibodies that they are unable to make for themselves. This is good news, but only for those pathogens that are common in the pool of plasma donors used to produce the Ig product. In the U.S., all Ig products are made from plasma from U.S. donors so there will not be much antibody in those products directed at pathogens that are rare in the U.S. For many infectious agents that patients with CVID encounter there are good levels of protection, but there may not be much protection for agents like yellow fever, West Nile virus or other tropical microbes. For certain infectious agents like malaria, an effective vaccine is not available and in that case avoidance of mosquitoes (netting over the bed, repellants) and anti-malaria drugs are used to help protect patients with impaired immunity as well as those with normal immune responses.

As a general rule, patients with impaired immunity can travel widely and often without being unduly concerned about acquiring exotic infectious diseases as long as they use common sense in selecting their travel destination and method. Perhaps a camping trip lasting for several weeks in a tropical jungle would not be a good choice, but travel to common tourist destinations with decent sanitation should be a successful and enjoyable experience.

I heard that I might be able to try out a new treatment option if I enroll in a clinical trial. That would be great and I would really like to get involved in a clinical trial. How can I find a good one?

Clinical trials are research studies in groups of volunteers to address specific health issues. These studies may be designed to learn more about a specific disorder, identify the causative gene, discover new therapies, or improve existing treatments. By participating, patients can be more involved in their own healthcare and, in some, volunteers may gain access to new treatments before they become widely available.

Participation in clinical trials is also an important way to help others affected with a similar disease. Volunteer participation increases the body of information available to find out more about the causes, special features of the disorder and the most effective treatments.

If you are interested in learning more about current clinical trials in the United States, check out the Web site offered by the U.S. National Institutes of Health and developed by the National Library of Medicine. The website clinicaltrials.gov lists information about clinical trials in an easy to search format. Searches can be carried out by diagnosis, treatments, geographic locations and various combinations of keywords.

Although the IDF does not review and/or endorse any particular clinical trial listed on this site, all trials on this site have received approval by institutional review boards. Frequently, these trials have also been authorized by the U.S. Food and Drug Administration, particularly if the trial involves testing responses to new pharmaceutical agents or new uses for existing treatments.

Choosing to participate in a clinical trial is an important personal decision. As with any decision concerning your disease and care, you should talk to your physician before joining any trial.

I keep hearing about MRSA. I have CVID and am concerned that I have a higher risk of getting MRSA.

Methicillin-resistant Staphylococcus aureus bacteria often referred to as MRSA, has become a significant infection problem both in hospitals and in the general community. It is a type of staph that is resistant to methicillin and other commonly used antibiotics in the same class, including penicillin, amoxicillin, and oxacillin. While MRSA is of concern to everyone, patients with a variety of primary immunodeficiencies may be at increased risk.

I suffer from an IgG deficiency. I was diagnosed ten years ago at age 39. I receive IVIG every 21 days. Within the last 6 months I have experienced 10 cracking and crumbling teeth. I was wondering if there is any connection between the deficiency and the tooth problem. Any help would be greatly appreciated.

Problems with teeth have been reported with many different types of PI, but rarely can they be attributed to the immunodeficiency itself. As you know, immunoglobulins, particularly IgA, are found in the saliva and are thought to be important in preventing infection at the mucosal boundary. However many individuals with antibody deficiency never experience problems with their teeth so it is difficult to attribute dental problems per se to the antibody deficiency itself. Defects in the function of granulocytes have also been shown to lead to dental disease, but this usually is apparent from early childhood.

One might expect antibody deficiency could lead to gingivitis or other problems with infected gums, but “cracking and crumbling” teeth would not be expected to be the consequence of an antibody deficiency in the oral cavity – sounds more like a problem with calcium metabolism than immunodeficiency.

I was diagnosed with CVID this year. I received literature from IDF which included information on the IDF eHealthRecord and keeping an infusion log. I was told that I should be logging all my infusions, but my nurses tell me that I do not need to, because they keep a record. I am afraid of upsetting my nurse & doctor, but I would really like to keep a record of all my infusions. How can I make them understand?

There are many reasons for keeping an infusion log. In today’s world, you need to be your own advocate and it is in your best interest to keep track of which brand of immunoglobulin you receive. Some patients tolerate one manufacturer’s brand better than another and knowing which brand you have received allows you and your doctor to determine which product works best for you.

You may never know when keeping a copy of your own infusion log will pay off. For instance, many people called IDF after they were displaced after Hurricane Katrina. They wanted to know what type of IVIG they were using because their site of infusion was under water and there was no one there to answer their questions. Unfortunately, there was no way for IDF to obtain these answers.

In rare instances, questions relating to the donor pool and the manufacturing process may arise about a product, and knowing which brand you have been receiving and the lot number will be of value in determining whether you have received the specific IgG preparation under question.

In addition to logging your infusions, you should also sign up with the Patient Notification System (PNS). Patients are notified of therapy withdrawals via a free, confidential communications network. The PNS is a 24-hour communication system that provides information on plasma-derived and recombinant (made from DNA) product withdrawals and recalls in North America. The system was created to provide consumers with a single, convenient and confidential source for up-to-date information about the plasma protein therapies they use and depend on. To sign up with the PNS, visit www.patientnotificationsystem.org.

I would like to receive my flu shot but am scheduled for my IVIG therapy in two weeks. Is there any waiting period between receiving the flu shot and receiving my treatment?

Congratulations on taking this responsible step of getting your flu shot! Fortunately, there are no restrictions concerning the timing of your flu shot and your IVIG treatment. So, you can receive your flu shot at a time when it is convenient for you.

Diagnosis Questions

Can you explain the difference between a primary and a secondary immunodeficiency? I was diagnosed with Common Variable Immune Deficiency Disease (CVID) when I was 45, so is this considered a primary or a secondary immunodeficiency?

Primary immunodeficiency diseases are disorders caused by a defect in one or more genes involved in the development or function of the immune system. By contrast, a secondary immune deficiency disease is one in which the immune system is compromised by factors from the outside, such as viruses, radiation treatments or chemotherapy.

The distinguishing feature of a secondary immunodeficiency is that another factor can be identified which results secondarily in a problem with immunodeficiency. For example, AIDS is caused by a virus infection that attacks a component of the immune system and results secondarily in an immunodeficiency. There are kidney and GI disorders that cause tremendous loss of serum proteins (including immunoglobulins) into the urine or bowels. This then depletes the body of so much immunoglobulin that patients may develop infections – secondary to their renal or GI disorder. Also, some drug treatments such as steroids that are given to inhibit inflammatory conditions can cause immunodeficiency, as do drugs given for cancer therapy or to organ transplant recipients.

IDF is concerned with the other class of immunodeficiency disorders, primary immunodeficiency diseases. These are diseases that patients are born with or that seem to run in families, implying that they have their origin in a genetic mutation or defect. Over the past decade, the list of these diseases where a causative gene has been identified and proven has expanded from a handful to over 100 distinct disorders. There still are many disorders, including CVID, where the specific genetic component still has not been identified for most patients, but these cases are also “genetic” and eventually all the genes involved will be identified. CVID is considered to be a primary immunodeficiency, regardless of age at onset.

Can you please tell me the difference between being immune deficient and being immune suppressed. Or if I have CVID, am I considered to have both?

In brief, the use of the phrase immune deficient is traditionally used to describe an individual whose immune system is not functioning up to par because of some intrinsic abnormality caused by an inherited defect. However it has also often come to be used to describe someone with an acquired condition secondary to something like HIV infection, exposure to excessive radiation, toxic chemotherapy, steroid treatment, cancer, etc., etc. The term immune suppressed is most often used in the context of the later group of individuals, those who have acquired their immune deficiency because of extrinsic rather than intrinsic factors.

My personal use of the terms would not describe a patient with CVID as being immune suppressed unless they were also being treated with steroids or other drugs to intentionally suppress an autoimmune condition like hemolytic anemia, thrombocytopenia or something similar in which case they would be both immune deficient and immune suppressed. Immune deficient does not necessarily imply that the whole immune system is incapable of functioning since we often see abnormal immune responses directed at self (autoimmunity) in patients with immune deficiency involving the parts of the immune response that are responsible for the regulation or fine tuning of immunity.

How did common variable immune deficiency or CVID get its name? It doesn’t seem so common to me!

The history of the naming of common variable immune deficiency or CVID as a diagnosis is an interesting one. It was actually an attempt to clarify a confusing situation that developed in the 1970s when more and more disorders resulting in immunodeficiency were being described. At that time, most of the distinctive disorders involved children and had a clear genetic or hereditary basis. However, the most common disorders involving adults were then called by a number of different names, including perhaps the most common, adult acquired hypogammaglobulinemia.

As the data on these adult patients was reviewed, it became apparent that there were a variety of different presentations and quite a range of abnormalities seen in these patients and sometimes in their first-degree relatives. Some of the patients with hypogammaglobulinemia had relatives with normal immunoglobulin levels, but who instead had autoimmune disorders such as rheumatoid arthritis, sarcoidosis, hemolytic anemia or lupus. Some had forms of dysgammaglobulinemia, including isolated IgA deficiency. The findings of intensive laboratory testing were also variable among these patients. There was no distinctive pattern that would allow specific subtypes of the disorder to be clearly recognized.

A committee of the World Health Organization decided that the best approach would be to lump all of these apparently different – yet similar – undefined disorders into a single category called common variable immune deficiency. It was thought that additional testing would define specific subsets or distinct disorders within this general group diagnosis and ultimately, they would then be given their own specific names. CVID remains a diagnosis that contains a variety of disorders with different genetic bases, although a few unique disorders have been identified within this group that now have their own diagnostic names. Unfortunately, the genes involved in the vast majority of patients with CVID have not yet been discovered. Consequently, the diagnosis of CVID still largely represents a grouping of similar, but different disorders.

I am newly diagnosed with a primary immunodeficiency. What are some of the things that I should be doing, so I can be ahead of the game?

We applaud your foresight and recognizing the need to take control of your situation. Some things to consider doing are to keep copies of all your medical records in a file and keep an infusion log with the IDF eHealthRecord, sign up with the Patient Notification System, and sign up with the manufacturer’s gap in insurance program:

  1. Medical Records - From this point forward, keep copies of all your medical records, i.e. your blood work prior to going on immunoglobulin therapy, medically documented infections, hospitalizations, CT scans, etc. which you can easily maintain all together in the IDF eHealthRecord.
  2. Infusion Log - There are many reasons for keeping an infusion log. In today’s world, you need to be your own advocate and it is in your best interest to keep track of which brand of immunoglobulin you receive. Some patients tolerate one manufacturer’s brand better than another and knowing which brand you have received allows you and your doctor to determine which product works best for you. You may never know when keeping a copy of your own infusion log will pay off. For instance, many people called IDF after they were displaced after Hurricane Katrina. They wanted to know what type of IVIG they were using because their site of infusion was under water and there was no one available to answer their questions. Unfortunately, there was no way for IDF to obtain these answers. In addition, in rare instances, questions relating to the donor pool and the manufacturing process may arise about a product, and knowing which brand you have been receiving and the lot number will be of value in determining whether you have received the specific IgG preparation under question. You can record your infusions in the IDF eHealthRecord
  3. Patient Notification System - Sign up with the Patient Notification System (PNS). Patients are notified of therapy withdrawals via a free, confidential communications network. The PNS is a 24-hour communication system that provides information on plasma-derived and recombinant (made from DNA) product withdrawals and recalls in North America. The system was created to provide consumers with a single, convenient and confidential source for up-to-date information about the plasma protein therapies they use and depend on. To sign up with the PNS, visit the Patient Notification System.
  4. Insurance Lapse Programs - As long as you have private health insurance and you are using one of the participating manufacturers’ products, sign up with their insurance lapse programs. These programs are designed to ensure that people who rely on immune globulin therapy can continue to receive their vital treatments even if they experience a lapse in private health insurance. For instance, if you are switching jobs and there is a 30-day waiting period – you can redeem certificates you earn by being enrolled in one of these programs for a free infusion, BUT you must be enrolled in the program first to start collecting certificates.
I have CVID and I am wondering about allergy testing. Will allergy tests performed on persons on IgG therapy be accurate or will you get the results of the 70,000 to 90,000 persons who donated for the lots? My immunologist says there is no reason to test but someone else I spoke to says just the opposite.

The blood tests for specific allergies are designed to measure IgE antibodies and IgE is NOT present in the infused IVIG (it contains only IgG). Therefore IVIG replacement should not interfere. Concerning negative allergy skin tests, patients with severe antibody deficiency may also not produce IgE and their symptoms may be unrelated to classic allergy for that reason. However patients with antibody deficiency diseases like CVID do frequently have enough function left to produce IgE and therefore do develop classic allergic symptoms. Just to confuse the issue, unfortunately negative skin tests do not always mean that the symptoms are not due to an allergic mechanism as you can see an occasional patient with classic seasonal allergy who still has negative allergy skin tests.

I have CVID and I am wondering about allergy testing. Will allergy tests performed on persons on IgG therapy be accurate or will you get the results of the 70,000 to 90,000 persons who donated for the lots? My immunologist says there is no reason to test but someone else I spoke to says just the opposite.

The blood tests for specific allergies are designed to measure IgE antibodies and IgE is NOT present in the infused IVIG (it contains only IgG). Therefore IVIG replacement should not interfere. Concerning negative allergy skin tests, patients with severe antibody deficiency may also not produce IgE and their symptoms may be unrelated to classic allergy for that reason. However patients with antibody deficiency diseases like CVID do frequently have enough function left to produce IgE and therefore do develop classic allergic symptoms. Just to confuse the issue, unfortunately negative skin tests do not always mean that the symptoms are not due to an allergic mechanism as you can see an occasional patient with classic seasonal allergy who still has negative allergy skin tests.

I have X-Linked Agammaglobulinemia and want to explain this disease to my future in-laws. Unfortunately, they are from Austria and only speak German. Where can I get information written in German that will be easy to understand?

You are in luck! The International Patient Organisation for Primary Immunodeficiencies (IPOPI) has produced 6 different booklets in 5 languages based on IDF’s Patient and Family Handbook for Primary Immunodeficiency Diseases 4th Edition. Booklets on Chronic Granulomatous Disease, Common Variable Immunodeficiency, Hyper IgM Syndrome, Severe Combined Immunodeficiency, Wiskott-Aldrich Syndrome, and X-Linked Agammaglobulinemia are available in English, French, German, Spanish, and Portuguese. PDF versions of the booklets are available on the IDF’s website, and hardcopies can be ordered through the IPOPI site.

If primary immune deficiency diseases are genetic, why are some of these diseases diagnosed in adults?

You are not alone in being diagnosed with CVID as an adult; this has happened to many patients. There are many reasons why this occurs. It is possible that these defects are present all along, but not diagnosed due to compensating immune functions that keep serious problems from developing earlier. It is also possible that there is a slowly deteriorating immune function, genetically determined, that does not become significant until later in life.

Some people who have been recently diagnosed have felt unwell for years, without any answers as to what was causing their illnesses and problems. In some cases, a diagnosis can actually be a relief for the patient by finally providing that answer. However, the newly diagnosed adult patient will face questions and problems and it is important to learn as much as possible about the new diagnosis. A good place to start to learn about primary immunodeficiency diseases and keep current is with the IDF Website at primaryimmune.org. In most cases, the well-informed patient, working with an attentive medical staff should be able to pursue a career and live a full, active and productive life.

Private Insurance Questions

Can I itemize medical deductions on my federal tax return if I already received reimbursement for those expenses from the health care flexible spending account?

No. That is considered double dipping by the IRS. You can have a health care FSA and take an itemized deduction for medical expenses, but you cannot claim an itemized deduction on your federal income tax return and receive a reimbursement from your health care FSA for the same medical expense. You should speak with a tax consultant on what would be the best option for you.

How can drug trials affect health insurance coverage? I have the opportunity to be involved with a subcutaneous immunoglobulin (SCIG) trial, but want to make sure I have coverage.

You should remain insured while on a clinical drug trial. A clinical drug trial will only pay for what the trial is intended to do; in this case, you may be receiving your SCIG free for a certain amount of time. Keep copies of the study to show that you had been receiving treatment. You may be able to get a copy of the study from www.clinicaltrials.gov. As long as you have been receiving treatment for your condition, the insurance company does not have good cause to deny coverage… just make sure to keep good records!

I have a PPO health insurance plan through my employer. If I see a nonparticipating provider, does that mean that I may be paying more out-of-pocket? What exactly does that mean?

Yes, in most cases you will be paying more money out-of-pocket to see a nonparticipating provider. A PPO Plan, or a Preferred Provider Organization, is a type of managed care coverage based on a network of doctors and hospitals that provides care to an enrolled population at a prearranged discounted rate. PPO members usually pay more when they receive care outside the PPO network. If you decide to see a nonparticipating provider, you should know the out-of-network benefits. Your share of the cost would be the out-of-network deductible, plus the coinsurance amount, plus the balance billing amount.

What is the balance billing amount? This is the difference between the billed amount and the contracted amount. For example, your doctor bills $500 for a service, however your insurance contracted amount (or allowed benefit) is $250. Assuming that your deductible has been satisfied and you have a 70%/30% PPO Plan, your out-of-network benefit pays 70% of the $250. So, you would be responsible for 30% of the $250 contracted amount which is $75. Add the balance billing amount of $250 and your total out-of-pocket payment is $325.

I have my health insurance through my employer. The deductibles and coinsurance have increased effective January 1 of next year. My immunoglobulin is going to cost a lot more out of pocket – what are my options?

First, make sure you get a copy of the summary plan description (SPD). The SPD provides a wealth of information — your health plan administrator should provide a copy. It outlines your benefits and your legal rights under the Employee Retirement Income Security Act (ERISA), the federal law that protects your health benefits.

Second, if your policy contains a “Case Management” benefit, call the member services line on the back of your insurance card and ask to be connected with a Case Manager. What do Case Managers do? They work for the insurance company. Their role is to explore your benefits and to get the best “benefit” out of your health insurance. They try to keep your costs down, which keeps the insurance company’s costs down.

What questions should you ask? First, explain to them what you are looking to do: you have been receiving immunoglobulin at the same site for years, but now your out-of-pocket costs have increased. Explain to them that you are looking to decrease your out-of-pocket costs. You would like to know, what your insurance pays if you receive your immunoglobulin:

A.) At a doctor’s office

B.) At an outpatient infusion site

C.) Through Home Healthcare

D.) Intravenous administration vs. subcutaneous administration

Finally, call a Home Healthcare company that provides immunoglobulin therapy and explain your situation. See if they offer any financial assistance programs. They will first take your insurance information to “do an insurance check”. This typically takes 48 hours. If you qualify for a financial assistance program, they will send you an application. However, they usually do not send the application unless you go on service with them. So make sure you are clear that you are exploring all your options before making a decision with your doctor.

Once you have done your homework and looked at all the avenues, take this information, including the different sites of care, mode of administration and monthly out-of-pocket costs, to your next doctor appointment. Sit down with your immunologist to discuss the different treatment options.

I hear that many primary immunodeficient patients are having problems with their health insurance. Luckily, I am curently not having any problems receiving my immunoglobulin, but is there anything I should do to prepare in case my insurance starts to question my use of IVIG?

This is a great question- one that may help many others. First of all, you have to be your own advocate. Request copies of all your medical records. Keep a copy of your blood work, prior to going on immunoglobulin replacement therapy and any medical records that document your history of severe infections, hospitalizations, etc. You can track all of this in the IDF eHealthRecord. Also, if possible, individuals with a primary immunodeficiency should be seeing an immunologist that sees many patients with the same insurance problems you may someday face. Chances are, since they have run into these issues already, they know how to work with the insurance companies.

My doctor no longer participates with my insurance company. When I made my appointment, he was still a participating provider, but he just cancelled his contract with them last month. I had no knowledge of this until I received a huge bill in the mail today from my doctor – Help!

The provider should have mentioned this to you when you walked into the appointment on the day of service. However, since that did not happen, you should first call your provider’s billing office and explain this situation. Be sure to give them the facts, such as, you have been a patient for X amount of years, you have your insurance through “ABC Insurance Company”, and that you were unaware that your doctor no longer participated with your insurance. Ask them what they suggest to do. During the phone call, be sure to write down whom you are speaking with, the phone number, the date and what was discussed. If this discussion does not help, you can appeal this decision.

Your Appeals and Grievance rights should be on the denial letter from the insurance company or in your Summary Plan Description. Read your rights carefully and do exactly what they tell you. Include the information that they request. It is also a good idea to print off your insurance claim history online with this provider. This will show how many times you have seen this provider and that your insurance company had been paying for the services.

The Appeals Department reviews thousands of cases, so keep it simple and do not become emotional. You want to be straight and to the point in your appeal letter. Finally, ASK them for what you want. For example, in this case, end your appeal with “As you can see from the information I provided, I am asking you to overturn this denial and pay this claim. Thank you for your consideration. I look forward to hearing from you within 30 days.” Depending on the contract terms of agreement between the insurer and your provider, they will base their decision to your appeal.

TIP for the future: On the day that you make an appointment with the provider, go to your insurance company’s Website and print off your provider’s information. The printout should be dated and include your insurance company’s Website. This shows your due diligence in ensuring that you are using participating providers and it gives you a leg to stand on if you ever need to appeal. You will have hard copy proof that the day you made the doctor appointment, according to “ABC Company’s Website”; your physician was a participating provider.

My husband and I are both offered health insurance through our employers. How do we choose the right one for us?

IDF created the IDF Health Insurance Toolkit to help patients choose insurance plans. For a comprehensive look at how to pick insurance plans go to IDF's Patient Insurance Center.

Here are some general guidelines that might help you when comparing the two benefit plans:

  • What are the monthly employee contribution levels?
  • How much is the annual deductible?
  • How much is the Out of Pocket Maximum?
  • What is the coinsurance amount (percentage of costs) after the deductible has been satisfied?
  • What is the copayment (flat dollar amount) for services such as doctor office visits?
  • What is not covered by the policy? Look for the exclusions.
  • What is the Home Health Benefit? Are nursing services and supplies associated with infusion covered?
  • Is the Prescription Benefit included in the deductible? Does it have its own Deductible? What are the copays?
  • Do your doctors participate with your plan?
  • Is the plan a HMO, POS, or a PPO?
  • Will the policy cover intravenous (IVIG) or subcutaneous (SCIG) treatment?
  • Does the policy cover dependents and spouse/domestic partner? Until what age or event?
  • Pull your Explanation of Benefits (EOBs) from the previous year. Look to see how you and your family used the health benefits and compare those benefits too.
  • Call your doctor’s office and speak with the billing department – ask them what insurance companies cause them less headaches.

After you have gathered all this information, you should have a clearer picture of what insurance plan is the better choice for you and your family.

My husband and I work and are both covered under our own health insurance policies through our employers. My open enrollment is in January and my husband’s is in July. Would I be able to cancel my insurance and go onto his insurance in July? I was told that I cannot make any changes to my insurance for 12 months.

As long as the Health Insurance Plan Document states that you are eligible for coverage under your husband’s employer’s plan, you can drop your insurance effective June 30th and go onto your spouse’s insurance plan effective July 1st.

I would suggest that you speak with your Human Resources Department and make them aware of your plans. You must notify your employer within 31 days of a qualifying event (i.e. July 1st) in order to cancel your current health insurance coverage.

The end of the year is fast approaching and I still have funds available in my health Flexible Spending Account (FSA). Am I correct that if I do not use the funds I will lose it? If so, how can I use up the remaining balance?

It is always best to keep track of your out of pocket medical costs so that you can appropriately contribute to your health Flexible Spending Account (FSA) because – YES it is a use it or lose it account. In the past many people would use up their funds at the end of the year by stocking up on over-the-counter items such as ibuprofen, acne products, or antacids. However, you need to be aware that these items do not necessarily qualify for reimbursement.

Effective January 1, 2011, distributions from your health FSA are allowed to reimburse over-the-counter medicines only if they are purchased with a prescription. The prescription, or a copy of it, must be submitted with the receipt in order to be reimbursed. This new rule does not apply to over-the-counter medical devices such as crutches, bandages, or diagnostic devices (ex. blood sugar test kits). So if you are in need of these items – stock up! Otherwise, if you have any doctor’s visits that need to be scheduled try to get in before the end of the year. You can submit those co-pays for reimbursement.

What do you think of high deductible health insurance plans?

It depends on your own personal circumstances.

Most insurance companies offer high deductible plans. The rationale of these plans is to offset the high premium increases that many employers and employees are facing. If you think you can afford to pay out of pocket for care that is subject to the deductible, since the deductible needs to be satisfied before the insurance kicks in, this might be a reasonable alternative for you. Just be sure to read the policy carefully.

In addition to the deductible, you need to be familiar with other cost sharing requirements, such as the out of pocket maximum, what services are covered or excluded, pharmacy benefit (check to see if it is subject to the same deductible or has a separate deductible), office visits, home healthcare, inpatient hospitalization, outpatient hospitalization, and so on.

What is a “Domestic Partner Coverage” policy? My boyfriend and I live together, so can I drop my individual insurance policy and go on his employer’s insurance?

The first step is to find out if “Domestic Partner” benefits are available under his employer’s policy. Domestic partner benefits are benefits that an employer chooses to offer to an employee’s unmarried partner, whether of the same or opposite sex. Private employers are not required to offer health insurance to any employees, including domestic partners. Employers that choose to offer health benefits must follow federal law and state law, when applicable.

The second step is to read the eligibility definition and see if you qualify. Employers sponsoring group health insurance plans for their employees define the policy’s eligibility criteria. When they purchase a policy from an insurance company, the eligibility requirements are specifically stated in the policy. Thus, whether opposite-sex domestic partners are eligible under the policy is determined by the employer. Employers may extend their eligibility to include domestic partners; some limit it to same-sex partners while others extend it to both same-sex and opposite-sex partners.

The third step is to make sure you have the documentation needed for the employer. An employer that offers benefits to the domestic partner creates a definition of what an eligible domestic partner is. The most common definitions include the following: 1) the partners must be at least age 18; 2) neither person is related by blood; 3) the partners must be in a committed relationship; 4) the relationship must be exclusive; 5) the partners must be financially interdependent. Documentation of proof of a domestic partner relationship can take many forms and it is the responsibility of the employer to determine what is appropriate. Some employers are satisfied with the partners signing an affidavit of their relationship. Some employers may require proof of some financial relationship, such as a joint lease or mortgage.

When can I start using my healthcare flexible spending account?

You can access your entire year’s worth of contributions at the start of your employer’s benefit plan year. For example, if your employer’s benefit year starts on January 1, you could get your child’s braces on January 2nd and be reimbursed for the entire out-of-pocket amount right away, before the year’s entire payroll deductions have been made.

Medicare/Medicaid and Other Government Subsidized Health Plans

I am on Medicare and my home healthcare company just told me that my IVIG would be covered under Part D and not to worry. I just received my Summary Notices from Medicare stating that my IVIG had been denied!

If you have a primary immunodeficiency disease with any of the diagnosis codes 279.04, 279.05, 279.06, 279.12, and 279.2, your IVIG treatment is reimbursed under Medicare Part B. If your home healthcare company submits the IVIG service claim under Part D, it will be denied, because IVIG for primary immunodeficient patients is not covered under Medicare Part D. Your home healthcare company will have to reprocess and submit those IVIG claims to the Medicare Part B carrier.

In some cases, a Medicare Advantage plan may cover other primary immunodeficiency disease diagnosis codes under Part D. You should check with your Medicare Advantage provider to see how they are processing your claim.

I have Medicare because I was approved by the Social Security Administration. My husband and I also have health insurance through his employer. Which insurance is primary?

If your husband’s employer has 100+ employees (large group), the employer sponsored group plan would be primary and Medicare would be secondary.

Sometimes employers with fewer than 100 employees join other employers in a multi-employer plan. If at least one employer in the multi-employer plan has 100 employees or more, then Medicare is the secondary payer for disabled Medicare beneficiaries enrolled in the plan, including those covered by small employers.

For example: Henry works 37.5 hours (full-time) for ABC Company, which has 250 employees. His wife Sara is 41 years old & is disabled. Henry and Sara are enrolled in the ABC Company’s group health insurance. Sara also has Medicare because of her disability. ABC Company’s group insurance would be Sara’s primary insurance; Medicare would be secondary.

I will be turning 65 at the end of the year, and I am trying to understand Medicare coverage. I have CVID and do subcutaneous Ig therapy. Will this be covered and what is my best option?

There are many options when it comes to Medicare coverage, and you will have to do a little investigative work to determine what is going to work best for you.

Your subcutaneous therapy will be covered under the traditional Medicare Part B medical benefit. This is only covered at 80% so you will want to look into getting a supplemental/medigap plan to cover the remaining amount.

Another option is a Medicare Advantage plan (Part C). These plans are sold as an “all in one policy” and act more like a private insurance. According to Medicare regulations, the managed care plans must provide enrollees with all Part A and Part B benefits. Medicare Advantage plans are not required to provide enrollees the same access to providers that is provided under original Medicare.

The cost for your treatment is dependent upon the plan design. You could have a flat $20 copay, or you could be responsible for a percentage of the cost (co-insurance). Over the past few years, patients with Medicare Advantage plans have reported to IDF that most have a 20 to 30% coinsurance for treatment!

Unfortunately most of these patients picked the Medicare Advantage plan thinking it acted the same as traditional Medicare Part B and a secondary plan. It is important to keep in mind that if you choose an advantage plan, you are not eligible to obtain a secondary policy. Make sure you know the coverage before enrolling!

Since Medicare plans vary from state to state and even by counties within a state you need to research what plans you are eligible for. You can contact your state’s SHIP program as they have trained counselors who can tell you the plans you are eligible for and assist you in finding the answers to your questions regarding coverage. To find your state’s SHIP program contact information, go to Seniors Resource Guide.

  • Make sure you do a thorough plan comparison to determine what will work best for you. Information to know before purchasing a plan:
  • What is my out of pocket maximum?
  • Do I have a deductible?
  • Is my deductible included in the out of pocket maximum or is it in addition to the maximum?
  • How is immunoglobulin covered?
  • Do I have a coinsurance or a flat co-pay?
  • Do I have options for site of care?
  • Are there out-of-network benefits?

Once you have the details of your plan options, you can make an informed decision on what will work best for you. Download the IDF Health Insurance Toolkit as it has helpful information and comparison worksheets to help you do this.

Disability Questions

I applied for Social Security Disability and I have been denied Even though I am really sick. What is my next step?

Appeal your denial! Some statistics show that 60% to 70% of disability claims are initially denied the first time and many of those people give up and do not appeal their denial.

If your claim is denied at the initial filing, you will have the opportunity to file an appeal known as a reconsideration claim and submit new medical evidence. A new disability examiner and physician will review your claim. If your claim is denied for a second time, you have the right to file for an Administrative Law Judge Hearing. At this stage, you will be able to testify your disability impairments to the ALJ in person.

For assistance in understanding the complicated issues in proving entitlement for Social Security Disability you can contact A.C.C.E.S.S. at 1-888-700-7010.

I was diagnosed with CVID five years ago and I have been very sick and unable to work. I am thinking of applying for disability but I’m not sure what to do. Do you have any suggestions?

There are a few tips that may be helpful to you as you apply for Social Security Disability.

  1. When filing a claim, it is best to obtain the most current records from your relevant treating sources, for example, your immunologist, rheumatologist, etc., and submit them at the time of the application. This will help expedite your claim. You should also obtain letters from your treating physician and other specialists with supporting objective evidence such as lab findings, MRIs, x-rays, etc stating that you are unable to sustain a 40 hour workweek. This will greatly support your claim.
  2. Stay in contact with your disability examiner every 10-14 days. Their name and phone number should be located on the mail they send to you. Ask them if they have received all your pertinent medical records. Most hospitals and physicians’ offices rely on copy services which only come by once a week. It may take several phone calls/faxes to obtain the needed information which could make a huge difference in your claim.
  3. When Disability Determination Services (DDS) sends you forms to complete regarding how pain affects your activities, fatigue, etc you should be as detailed as possible and don’t be afraid to add extra sheets to the forms. Describe a typical day when completing an activity of daily living form. You will also be asked to complete a work history form. This should include the jobs you worked in the last 15 years. Please be as detailed as possible regarding your job duties, rate of pay, supervisory duties, etc.
  4. You may be asked to attend a medical exam at no expense to you to in order to obtain more information. This is more common in cases such as rheumatoid arthritis, SLE, fibromyalgia etc when detailed joint range of motion and mobility/gait information is needed in addition to the information about your PI. It is very important that you keep this exam. Your disability examiner will contact you by phone or mail regarding the details of the exam.

For more detailed information, please go to the Social Security Administration Website.

Patient Rights

Am I eligible to use Family & Medical Leave Act (FMLA) for my infusions? How about for my child’s infusions?

Yes. FMLA permits you to take leave to receive “continuing treatment by a health care provider,” which can include recurring absences.

FMLA is a law that requires employers (with 50 or more employees) to provide up to 12 weeks of unpaid, job-protected leave to employees who have worked for the employer for at least one year. Its goal is to make sure that employees can take time off work, with benefits, when a disability, illness or the birth of a child prevents them from working.

An employee’s children, spouse, and parents are immediate family members for purposes of FMLA. The term “parent” does not include a parent “in-law.” The term “children” does not include individuals age 18 or over unless they are “incapable of self-care” because of mental or physical disability that limits one or more of the “major life activities” as those terms are defined in regulations issued by the Equal Employment Opportunity Commission (EEOC) under the Americans with Disabilities Act (ADA). You can learn more at the U.S. Department of Labor.

Can a patient with a primary immunodeficiency disease still get life insurance?

As long as it is a guaranteed issue policy, an individual with a primary immunodeficiency will be able to obtain life insurance. Guaranteed issue insurance is a policy offered without asking health questions or requiring a medical examination. Most employers offer (or may pay) for a term life insurance plan for their employees; these are guaranteed issued. They may also allow their employees to get additional insurance (often called “a buy-up”) for themselves and the employee’s dependents (underwritten as a voluntary group plan) up to a certain amount without asking any health questions.

I am very unhappy with the infusion center where I receive my treatments. Patients have no privacy as we are asked questions and set up in chairs about 1 foot away from each other. I experience reactions such as chills and vomiting and find it quite embarrassing to have to go through this in front of other patients. Is this common practice at infusions centers?

We are so sorry to hear that your experience with treatment has not been a good one. Patients deserve to be comfortable and have privacy during treatment. While all infusions centers are different, we have not heard from the community that this is common practice. You absolutely have the right to discuss your need for privacy with your physician and the infusion center. Another point that that should be noted is their violation of the HIPAA privacy rule. They should not be asking you questions or discussing your health information or anything considered personal identifiable information in front of other patients. If the infusion center is not willing to accommodate you then you certainly have the right to seek another center, or seek home health care for your IVIG. Make sure to speak to your doctor about this and verify your coverage with your insurance carrier.

I asked my Human Resources department for a copy of our medical insurance’s Summary Plan Description, but they said that they do not have a copy and told me to call the insurance company. I called the insurance company and they said that I need to get this from my Human Resources department – HELP!

Employer sponsored insurance plans have been established under the guidelines of the Employee Retirement Income Security Act of 1974 (ERISA). ERISA requires that certain disclosures be made to plan participants. One of these disclosures is called the Summary Plan Description (SPD). The SPD informs participants about the plan features and what to expect of the plan. Among other things, the SPD must include information about:

  • When and how employees become eligible to participate
  • The source of contributions and contribution levels
  • The vesting period, i.e., the length of time an employee must belong to a plan to receive benefits from it
  • How to file a claim for those benefits
  • A participant’s basic rights and responsibilities under ERISA

The document is given to employees after they join the plan and to beneficiaries after they first receive benefits. A SPD must be redistributed periodically and provided on request by the plan administrator.

What happens if the plan administrator (in this case, your employer) does not provide the SPD on request? If audited, your employer could face up to $100 a day in penalties until you receive the materials, unless the materials were not sent because of reasons beyond the control of the plan administrator. Of course, this is the worst case scenario and you would not want to threaten your employer with this and potentially put your employment at risk.

However, it is the responsibility of the plan administrator to provide you with a copy of this document. You may want to call your local U.S. Labor Management Services Administration, Department of Labor, and ask them how you can proceed with getting a copy of your SPD document, without wanting to jeopardize your employment.

I received a letter from my insurance company which indicated that I have to switch to their preferred product. I am doing well on my current product and am scared to have to change it. Is there anything I can do so that I don’t have to switch my product?

We are sorry to hear about this and certainly understand why you do not want to change product. Immunoglobulin (Ig) therapies are not clinically interchangeable. According to the American Academy of Allergy, Asthma and Immunology’s Guiding Principles for safe and effective use of IVIG, specific Ig therapy should be matched to the individual patient’s characteristics, in order to ensure patient safety.

First, you should have your physician contact your health insurance company to request authorization for your current product. Your doctor should explain any medical reason(s) why it would not be safe for you to switch products.

If they will not authorize it and you are forced to switch to another product, make sure your treatment is well documented. Your doctor should contact the insurance company immediately if you have any adverse side effects to their preferred product. It is essential that they be made aware of any adverse side effects.

This is also the time for your physician to include another request for authorization for your original prescribed product. This request should be submitted along with the documentation from your treatment session with their preferred product. This should suffice for approval of your currently prescribed product.

My doctor will not give me a copy of my medical file. Don’t I have a right to have a copy of it?

HIPAA Privacy Law provides many rights over your health information. Providers and health insurers who are required to follow this law must comply with your right to: ask to see and get a copy of your health records; have corrections added to your health information; receive a notice that tells you how your health information may be used and shared; decide if you want to give your permission before your health information can be used or shared for certain purposes, such as for marketing; and get a report on when and why your health information was shared for certain purposes.

If you believe your rights are being denied or your health information isn’t being protected, you can file a complaint with your provider or health insurer.

It is important to get to know about these important rights, which help protect your health information. You can ask your provider or health insurer questions or to learn more about your rights, including how to file a complaint, visit the U.S. Departent of Health & Human Services.

My son was having reactions to the product he was being infused with, which he had never experienced before. When I asked his infusion nurse if his product had been changed, I was told that they were not allowed to tell me which product he was being infused with. How can this be correct?

It is not correct. You have the right to know what product you are receiving through infusion. In fact, you should always check with the infusion nurse regarding what product you are receiving every time you receive an immunoglobulin treatment, just to make sure you are getting the right product.

If you are told that you are not allowed to know what product you are receiving, ask to speak with the physician on duty or, if you are receiving home infusions, call the specialty pharmacy company managing your home infusions. About one third of all adverse reactions to Ig infusions occur in the context of trying a new product and it is important that changes are not made without your knowledge or without your physician’s direct order.

Not only is it your right to know what product you are receiving, it is your responsibility to keep track of your product, the lot number, and how much you are infused in an infusion log. If you have this information and there is a product recall, you will know if you are affected.
You can keep track of this information as well as your other medical records in the IDF eHealthRecord a one-of-a-kind electronic personal health record developed for individuals and families living with primary immunodeficiency diseases. It can help you track diagnosis, infections and symptoms and log your immunoglobulin treatments as well as other medications.

I am the human resources manager at a large company. Recently, the president of the company noticed that the medical claims were higher than normal, due to one large claim. He asked me who the employee was with the large claim. Actually, I have a primary immune deficiency and I’m the employee with the large claim. Can the president find out about my high medical costs? After all, he is the president!

As the HR manager, I’m sure you are aware that this question poses a HIPAA privacy issue. First, only designated employees can receive protected health information (PHI). There are several reasons why you do not have to give this information to the president.

  1. The president is not a designated employee. HIPAA rules state that to receive PHI, an employer must appoint specific designated employees to have access to PHI. The designated employees need to be identified in the plan document by name or title.
  2. An inquiry by an executive is not a permissible purpose. Even if the president is a designated employee, HIPAA allows use of protected information by designated employees only for permissible purposes. In this case, the president did not have a purpose for obtaining the employee’s identity that was related to plan administration.
  3. PHI cannot be used for employment purposes.

Final thought, HIPAA Privacy laws are there to protect an employee. The plan’s HIPAA privacy obligations are imposed on the employer by including those obligations in the plan document. The employee, in this case—you, can sue. However, if employees talk openly about their high medical costs at work, HIPAA Privacy may not be able to protect them.

I am afraid that I might lose my job, because I have been sick 3 times this winter. Where can I find information on American Disabilities Act (ADA) and Family Medical Leave Act (FMLA)?

The Patient Advocate Foundation has a wonderful resource called “First My Illness, Now Job Discrimination: Steps to Resolution.” The section called Understanding the ABC’s of the ADA and the FMLA explains in detail what you need to know about these two major laws that exist to ensure that anyone with a disability or anyone dealing with a health crisis is not discriminated against.

Miscellaneous Services

Does IDF have a financial assistance program? Our daughter was recently diagnosed with CVID. We would like to get a second opinion at a teaching hospital, but we have no money to pay for the airplane tickets.

The Immune Deficiency Foundation does not have any financial assistance programs.

However, the National Patient Travel Hotline has assisted many of our patients. The National Patient Travel Hotline provides information about all forms of charitable, long-distance medical air transportation and provides referrals to all appropriate sources of help available in that network. Their goal is to “ensure that no financially-needy patient is denied access to distant specialized medical evaluation, diagnosis or treatment for lack of a means of medical air transportation.” For additional information, go to http://www.patienttravel.org or call 1-800-296-1217.

I have had CVID for 15 years and have been seeing a hematologist. I would like to see an immunologist who knows about CVID. Can the IDF recommend a doctor for me?

IDF does not refer or recommend immunologists. However, if you visit the IDF website Locate a Physician page, we will be happy to provide you with the names of immunologists in your area that we know see primary immunodeficient patients.

You can also call IDF at 1-800-296-4433.

I have CVID. I have many friends who are interested in donating their plasma. They had no idea that they can go to a plasma center. Can you tell me where they are located and more information about the process so I can share this information with my friends?

The Immune Deficiency Foundation has enjoyed a strong relationship with plasma centers throughout the United States. We appreciate their commitment to the collection of high-quality plasma, and establishing the highest levels of safety and quality assurances. Our association with plasma center staff members, plasma donors, and our own volunteers who visit the centers has grown strong over the years to develop into the IDF Plasma Center Partners program. To find locations for plasma donation and other important information about plasma protein therapies visit the Plasma Center Partners section.

I have Specific Antibody Deficiency and am currently trying to figure out what field of study I should pursue in college. I really would like to go into the medical field such as nursing or x-ray technology but am unsure if this is a good choice for me. Can someone with my disease work in these fields?

How exciting to prepare for college but we are sure there are many worries too! If you are generally healthy and do not have significant pulmonary issues with a chronic productive cough and limited exercise tolerance, then you should be able to carry out the duties of an X-ray technician or nurse without much problem.

The issues that could come up is whether you would be more susceptible to infections by working with patients, or could you pose a threat to patients by spreading infections to them. If you receive IG replacement therapy you should be relatively protected from picking up something, as long as you use sensible precautions. On the other side of the coin, you may have periods when you should not be in direct contact with some patients, for example, if you have a respiratory infection. It is difficult to know what the future will bring, so developments may alter your situation later in life – but that is true for everyone, whether or not we have a PI. You may also think about other health related careers such as working as a lab technician or a similar occupation that does not involve as much direct patient contact.

We are not aware of any general health standards that could impact admissions to training programs, but it would make sense to check with the programs that you are interested in to see if potential problems might exist. This something you should discuss with your treating immunologist as he/she would be in the best position to make any suggestions for you and to write letters to explain your health issues to the admissions department, if needed.

Medical Insurance

Can I itemize medical deductions on my federal tax return if I already received reimbursement for those expenses from my healthcare flexible spending account (FSA)?

If you did not have a FSA, you would be able to claim certain medical expenses as deductions on your taxes. However, since you do have an account, taxes were never taken out of your FSA contributions. For that reason, medical expenses paid for with FSA money cannot be included on your tax return. You should speak with a tax consultant when determining what expenses are eligible for deduction.

Is IVIG or SCIG treatment covered under Medicare Part B or Part D?

If you have a primary immunodeficiency disease with the diagnosis codes 279.04, 279.05, 279.06, 279.12, or 279.2, your IVIG/SCIG treatment is reimbursed under Medicare Part B. If your provider submits the IVIG/SCIG service claim under Part D, it will most likely be denied. Your provider will have to reprocess and submit those IVIG/SCIG claims through Medicare Part B.

In some cases, a Medicare Advantage plan may cover other primary immunodeficiency disease diagnosis codes under Part D. You should check with your Medicare Advantage provider to see how they are processing your claim.

What are some of the important health care reform changes that have already gone into effect as a result of The Patient Protection and Affordable Care Act (PPACA)?
  • Adult children may remain as dependents on their parents’ policy until their 26th birthday.
  • Children under age 19 may not be excluded for pre-existing conditions.
  • No more lifetime or annual caps on health coverage.
  • Free preventative care for all people.
  • The “doughnut hole” is in the process of closing for Medicare patients, making prescription medications more affordable for seniors.
  • Insurance plans are available for persons who have not been able to purchase medical insurance because of a pre-existing condition.
What are some tips for applying for Social Security Disability?
  • When filing a claim, it is best to obtain the most current records from your relevant treating sources, for example, your immunologist, rheumatologist, etc., and submit them at the time of the application. This will help expedite your claim. You should also obtain letters from your treating physician and other specialists with supporting objective evidence such as lab findings, MRIs, x-rays, etc stating that you are unable to sustain a 40 hour workweek. This will greatly support your claim.
  • Stay in contact with your disability examiner every 10-14 days. Their name and phone number should be located on the mail they send to you. Ask them if they have received all your pertinent medical records. Most hospitals and physicians’ offices rely on copy services which only come by once a week. It may take several phone calls/faxes to obtain the needed information which could make a huge difference in your claim.
  • When Disability Determination Services (DDS) sends you forms to complete regarding how pain affects your activities, fatigue, etc you should be as detailed as possible and don’t be afraid to add extra sheets to the forms. Describe a typical day when completing an activity of daily living form. You will also be asked to complete a work history form. This should include the jobs you worked in the last 15 years. Please be as detailed as possible regarding your job duties, rate of pay, supervisory duties, etc.
  • You may be asked to attend a medical exam at no expense to you to in order to obtain more information. This is more common in cases such as rheumatoid arthritis, SLE, fibromyalgia etc when detailed joint range of motion and mobility/gait information is needed in addition to the information about your PIDD. It is very important that you keep this exam. Your disability examiner will contact you by phone or mail regarding the details of the exam.

For more detailed information, please go to the Social Security Administration Website.

What are some tips for dealing with an insurance denial for my immunoglobulin (IG) replacement therapy?

Below are some “how to” tips from a clinical immunologist that has been successful in overturning IG denials. This is followed by a link to the IDF website that includes additional information including sample appeal letters that should be tailored to the patient’s clinical history.

The appeal should be short, succinct and carefully documented.

  • Keep in mind that you have 2 minutes of the Medical Director’s attention.
  • Provide well-accepted diagnostic studies which are in the practice guidelines.
  • Provide standards of practical criteria to support the laboratory studies.
  • Provide proof and documentation of serious infections/complications which have not been responsive to appropriate medical/surgical intervention; including clear radiographic evidence of persistent disease, e.g. lungs, sinuses et al, clinical documentation of infections etc.
  • Focus on the rationale for immunoglobulin therapy – a doctor’s letter that states “because it is medically necessary” is not specific enough to be added to an appeal letter. Precise statements are required. . . for example: 3 episodes of pneumonia with fever to 102. Chest x-ray (if available) showed lobar pneumonia and xx days of antibiotics were required.
  • Keep in mind that the insurance companies are reviewing thousands of appeals; therefore, the larger packets, will be put to the side. The shorter the appeal, the shorter the turn-around-time for a response.
  • When concluding the letter, add the names of the immunologists that have completed the scientific research on the diagnosis in question, should the insurer request a peer review. For example “Should you have any questions, I would request a peer review by either Dr. John Smith or Dr. Ann Jones from the University School of Medicine”

Click here for more information to share with your healthcare professional.

What is a POS?

POS is a Point-of-Service Plan. It is a type of managed care plan that is an HMO with an out of- network option. You can decide whether to go to a network provider and pay a flat dollar or to an out-of-network provider and pay a deductible and/or a coinsurance charge.

What is a PPO?

A PPO Plan, or a Preferred Provider Organization, is a type of managed care coverage based on a network of doctors and hospitals that provides care to an enrolled population at a pre-arranged discounted rate. PPO members can use doctors outside of the network but they will usually pay more when they choose to go outside the PPO network. If you decide to see a nonparticipating provider, you should know the out-of-network benefits. Your share of the cost would be the out-of-network deductible, plus the coinsurance amount, plus the balance billing amount.

What is the balance billing amount? This is the difference between the billed amount and the contracted amount. For example, your doctor bills $500 for a service, however your insurance contracted amount (or allowed benefit) is $250. Assuming that your deductible has been satisfied and you have a 70%/30% PPO Plan, your out-of-network benefit pays 70% of the $250. So, you would be responsible for 30% of the $250 contracted amount which is $75. Add the balance billing amount of $250 and your total out-of-pocket payment is $325. To minimize your out-of-pocket expenses, it is important to try to see a participating provider in your plan’s network.

What is an HMO?

HMO is a Health Maintenance Organization. As a member of an HMO, you select a primary care physician from a list of doctors in that HMO’s network. Your primary care physician will be the first medical provider you call or see for a medical condition. He or she will make any needed referrals to a medical specialist. Typically, these specialists will be part of the HMO network. If you obtain care without your primary care physician’s referral or obtain care from a non-network member, you will be responsible for paying the entire bill. Normally HMOs have a co-payment for the visit or service. This is the most restrictive type of plan.

What is an Indemnity Plan?

An Indemnity Plan is commonly known as a fee for service or traditional plan. If you select an Indemnity plan you have the freedom to visit any medical provider. You do not need referrals or authorizations; however, some plans may require you to precertify for certain procedures. Most indemnity plans require you to pay a deductible. After you have paid your deductible, indemnity policies typically pay a percentage of “usual and customary” charges for covered services; often the insurance company pays 80% and you pay 20%. Most plans have an annual out of pocket maximum and once you’ve reached this they will pay 100% of all “usual and customary” charges for covered services. Many health insurance companies have moved away from indemnity plans. This is the least restrictive, therefore the most expensive type of health plan.

What is COBRA?

COBRA, the Consolidated Omnibus Budget Reconciliation Act, gives workers who lose their health benefits the right to choose to continue group health benefits provided by their plan under certain circumstances.

The employer will send an election notice within 14 days after the employee’s last day on the health insurance plan. The employee will then have 60 days to decide whether to elect COBRA continuation coverage. The employee will then have 45 days after electing coverage to pay the initial premium. Expect to pay the total premium (the employer + employee contribution) plus 2% for administration. Also, another important note is that the premiums are not tax deductible, like they are when they are deducted from payroll.

There are certain qualifying events that would cause an individual to lose health coverage. The type of qualifying event will determine who the qualified beneficiaries are and the amount of time that a plan must offer the health coverage to them under COBRA. A plan, at its discretion, may provide longer periods of continuation coverage.

Qualifying Events for Employees

  • Voluntary or involuntary termination of employment for reasons other than gross misconduct
  • Reduction in the number of hours of employment

Qualifying Events for Spouses

  • Voluntary or involuntary termination of the covered employee’s employment for any reason other than gross misconduct
  • Reduction in the hours worked by the covered employee
  • Covered employee’s becoming entitled to Medicare
  • Divorce or legal separation of the covered employee
  • Death of the covered employee

Qualifying Events for Dependent Children

  • Loss of dependent child status under the plan rules
  • Voluntary or involuntary termination of the covered employee’s employment for any reason other than gross misconduct
  • Reduction in the hours worked by the covered employee
  • Covered employee’s becoming entitled to Medicare
  • Divorce or legal separation of the covered employee
  • Death of the covered employee
What is HIPAA?

The Health Insurance Portability and Accountability Act, better known as HIPAA, amended the Employee Retirement Income Security Act (ERISA) in 1996, to provide new rights and protections for participants and beneficiaries in group health plans. Understanding this amendment is important to your decisions about future health coverage.HIPAA includes protections for coverage under group health plans that:

  • Limit exclusions for pre-existing conditions;
  • Prohibit discrimination against employees and dependents based on their health status; and,
  • Allow a special opportunity to enroll in a new plan to individuals in certain circumstances.

HIPAA requires that group health plans give credit for prior coverage. You will receive credit for previous healthcare coverage, as long as you do not have a break in credible coverage of 63 or more days. This is called credible coverage. COBRA coverage also counts as credible coverage as long as you do not have a break in coverage of 63 or more days between COBRA coverage and the group health insurance plan.

In other words, as long as you do not go without insurance for 63 days or more, the insurance company cannot enact the pre-existing condition clause. It is important for you to know your benefits and to understand if your treatment needs to be preauthorized by your provider before rendering services.

For additional information on the HIPAA, go to the Department of Labor’s Employee Benefits Security Administration at http://www.dol.gov/ebsa.

What is the difference between co-pay and a coinsurance?

A co-pay requires the insured to pay a specified amount of out-of-pocket expenses for health care services such as doctor visits and prescriptions drugs at the time the service is rendered, with the insurer paying the remaining costs. Co-pay fees will vary among insurers but are typically very affordable. For example, a co-pay plan may require the insured to pay $25 per doctor visit or $10 per prescription up to a specified coverage limit.

With a coinsurance, a health plan will require you to pay a percentage rate meaning that you will essentially be splitting the cost of your healthcare with the insurance carrier. For instance, if the health plan has an 80/20 coinsurance rate, the insurance plan pays for 80% of the eligible medical expenses and you are responsible for the remaining 20%.

What is the difference between Group Health Insurance Plans and Individual Health Insurance Plans?

Group health insurance is a policy that is purchased by an employer and offered to eligible employees as a benefit of working for that company. Federal law mandates that no matter what health conditions members may have, no individual employee can be turned down by an insurance company for group coverage. This requirement is known in the insurance industry as “guaranteed issue.” Group insurance companies are also required to give employees credit for prior coverage against any pre-existing condition waiting period that may be imposed, as long as the employee had other health insurance coverage within 63 days of the application for new coverage.

Individual health insurance is different from group health insurance. The laws that mandate the types of services that must be included in individual policies are often different than those for group policies. Benefits of individual plans are generally less extensive than group plans. Benefits are often simpler and deductibles and co-insurance are generally higher in individual policies.

Individual health insurance companies are more limited than group insurance companies in their ability to spread risk, so this means that applicants will need to complete a brief health questionnaire when applying for benefits. Unlike group insurance companies, individual health insurance companies can decide not to cover people with serious medical conditions, deeming them “uninsurable.” The laws concerning individual health insurance differ from state to state.

What questions should I ask before selecting a new insurance plan?

IDF created the IDF Health Insurance Toolkit to provide you with information, facts, resources and worksheets to help you choose the best possible options for you and your family. You can find a complete list of questions to ask before selecting a health insurance plan from the IDF Health Insurance Toolkit.

Some items to consider

  • Will the policy cover intravenous (IVIG) or subcutaneous (SCIG) immunoglobulin treatment?
  • Are there particular locations that I have to get my treatment? Do they differ based on whether it is SCIG or IVIG?
  • Can I get my IVIG done at home?
  • Is there an annual deductible? If so, how much is it?
  • Is there a co-pay or co-insurance that must be paid for IVIG or SCIG treatment? If so, how much or what percentage?
  • What is my maximum out of pocket expense each year? (In other words, what is the most I will have to pay each year?)
  • Is there a waiting period before a pre-existing condition or illness will be covered and services paid for? If so, how long? Also, can it be waived?
  • Will the policy allow for use at both an “in-network” and “out-of-network” provider, physician, and pharmacy? If so, what are the differences in cost?