Retirement with a primary immunodeficiency diagnosis requires careful planning

When nearing retirement with a primary immunodeficiency (PI) diagnosis, experts emphasize—plan carefully and early. Senior adults with PI have unique needs. Expensive medication like immunoglobulin (Ig) replacement therapy, health problems that commonly accompany PI, a reliable and accessible healthcare team, and support from caretakers all play pivotal roles in retiring with PI.

Roger Kobayashi, M.D, an immunologist specializing in PI and a long-time foundation ally, recommends preparing years in advance for retirement when you have PI. Create an individualized checklist for your retirement preparations.

“The transition is going to be difficult, so you need to do it ahead of time,” said Kobayashi.

Financial planning for medical care after retirement is critical, said Nurse Advisory Committee (NAC) member Michelle Tran. Tran, a registered nurse (RN), works in an Ig replacement therapy infusion center and many of her patients who have PI are either nearing retirement or in retirement. She sees the challenges patients face when their medication becomes unaffordable.

The most important step to take in moving towards retirement as a person with PI, she said, is to prepare financially for the future by putting money into a retirement account, contributing to a 401K plan or pension through employment, paying into social security, or investing in some other type of saving plans.

“The best advice I can give to any patient is to talk to your human resources department early about retirement. It’s never too early to plan, even when you are in your 40s or 50s. Saving early reduces stress and allows patients more choices in managing their Ig replacement therapy. You don’t want to retire and find out you may not have enough coverage or that, financially, you aren’t ready for retirement,” said Tran.

“I’ve seen my patients struggle financially, even the ones who have a well-paying job, when they retire, because they are not aware of how expensive Ig replacement therapy is and the complexity of insurance coverages, including Medicare.”

Equally important is choosing a health insurance plan that provides the necessary coverage, particularly for Ig therapy or other specialty medications. Getting the best coverage for your medications should be a top priority. Know your diagnosis, review your Medicare (government-funded insurance) or private health insurance choices carefully, and meet with your doctor to outline the care you need.

Some employers may offer the option of continuing to stay on their health insurance even after retirement, as long as you pay the premiums. If you choose private insurance through your employer, you must also sign up for Medicare to avoid paying a penalty. Medicare has a seven-month window to sign up—three months before and after you turn 65 and your birthday month.

When you choose coverage under Medicare, you must carefully examine the options because choosing the wrong plan can prevent you from getting the medicine and other treatment you need.

“Transitioning to Medicare is a huge, complicated issue and you need to do it early. Some of my patients would transition to Medicare and not let us know that their insurance has changed. It created a monster problem,” said Kobayashi.

Medicare is offered in “Parts.” Medicare Part A covers in-patient costs, among other services. Medicare Part B provides 80% coverage for outpatient care, including Ig therapy for some PI diagnoses. Participants are responsible for the other 20% or need to obtain a supplemental plan to cover the remainder. Medicare Part D covers Ig therapy for PI diagnoses not covered under Part B, and provides coverage for other prescription drugs. Part D requires a monthly premium separate from Part B. It’s critical for people with PI who get Ig therapy to know which Medicare Part covers the therapy for their particular diagnosis.

“That is something that sometimes catches my patients off guard because their diagnoses fall under Part D, and they have a copay associated with Ig infusions, versus Part B. They need to take into consideration and carve out some savings for that,” said Tran. “When it comes to choosing Medicare, I tell my patients, ‘Be prepared and ask questions.’”

Another option under Medicare is Medicare Advantage, or Part C. Under Medicare Advantage, private healthcare companies, like UnitedHealthcare, Humana, and Blue Cross Blue Shield, offer healthcare packages. The downside to choosing a Medicare Advantage plan is that the company may increase premiums at any time, including costs related to specialty medications, or drop coverage of medications altogether.

“There is no advantage to Medicare Advantage, especially if you have a chronic illness. You pay for the private insurance, you have a copay, and then you usually have a high deductible,” said Carol Ambrosino, 72, diagnosed with common variable immunodeficiency (CVID), who is retired but works part-time for a provider.

Kobayashi urges patients to research Medicare plans and meet with their doctor before choosing a plan to avoid surprises.

“Under Medicare coverage, you may have to change doctors and change the services you're receiving. And Medicare doesn’t cover everything,” said Kobayashi “Patients need good health insurance coverage, and they need to understand it. Medicare is not just Medicare. You have to know what it covers.”

As retirement approaches, take time to organize medical paperwork that supports your diagnosis. People with PI should keep their own copies of medical records, including the results of the original lab work performed that led to the initial diagnosis.

“You’ve got to take responsibility for your own health, and that means keeping good records,” said Kobayashi.

Ambrosino is meticulous in keeping track of her medical records.

“You must always have that first blood work that says you had low or no Ig or explains why they ordered the report. I’ve traveled with it from New Jersey to Connecticut to Ohio. You must hold on to that because if you have to go through the pre-authorization process, and that’s usually with the Medicare Advantage plans, each company calls it a different way. You have to prove over and over again that you are doing this to keep yourself alive,” said Ambrosino.

When planning for retirement, another consideration is that PI often leads to other health problems that you may or may not have when you retire. Be prepared to deal with health issues that accompany certain PIs like CVID.

“If you have an immune deficiency, in addition to treating that, you’re going to get comorbidities like heart problems and kidney problems. A lot of immune deficiency patients develop disease-related complications. You get autoinflammatory disease, autoimmune disease, inflammatory bowel disease, and cancer,” said Kobayashi.

Health conditions that may develop in addition to PI should influence your decision-making when choosing where to retire. Think about access to reliable doctors, nurses, and infusion centers if needed, as well as caretakers like family and friends.

“Patients need to consider point-of-care after retirement. Will they be living at home or in a skilled nursing facility? Will they have infusions at home or at the clinic? Who’s the caregiver? Will they move out of the state? If they move out-of-state, then they need to find out the Ig therapy coverage in that state, whether there are medical facilities or infusion clinics, and who will be their healthcare team. If there are no infusion clinics nearby, can they do home infusions? So those are a couple of points I ask my patients,” said Tran.

With health insurance challenges and illness that can accompany PI, knowing who your caretaker will be should you need assistance is critical. Discuss the topic of your care with family members or close friends. Make sure that they have access to your will and advanced directives, a plan that outlines your medical care should you become unable to communicate.

“The overriding point is that things are going to get a lot more complicated than they ever imagined. And if you want to golf and you want to fish and you want to play with your grandkids, you better do all this stuff because you are in a category that makes it more difficult for you,” said Kobayashi.