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Ask IDF: What you’re asking about COVID-19

March 18, 2020


In an effort to answer some of the most common questions coming in through Ask IDF, we thought that we would publically address the top three over the past week. 

I don’t run a fever, even when I’m very sick. I'm concerned that I won’t be able to get tested for coronavirus, even if I display other symptoms.

Many individuals with a primary immunodeficiency (PI) report that they don’t run a fever even when they have contracted a serious viral infection. You can read more about the IDF study on body temperature here>>.

While the rules for COVID-19 testing have loosened a bit, the fever issue (and availability of tests in general) is a serious concern for many in our community. As time goes on, we believe that we’ll be able to get a foothold on this issue, but for now, it's still an issue.

If you have a history of a fever-response that conceals your clinical presentation, you should talk with your medical team directly and ask them to put a statement in your records that reads: 

“due to a diagnosis of primary immunodeficiency, this patient may not exhibit a fever symptom despite the severity of illness or disease.”

It’s really up to the providers to help us advocate for testing based on our clinical history.

Are there resources available to me in the case that I am unable to work (Americans with Disabilities Act, Family and Medical Leave Act, Unemployment Benefits)?

The short answer is perhaps. The longer answer is that it depends on your location and your job. If you need accommodations for your job (such as working remotely or requesting a change in hours that would allow you to work when others are not around), you can request this through ADA. You can ask your HR department for their ADA packet so you can initiate the request for accommodation. You will need your doctor’s support in this and there will probably be paperwork for them to fill out.

If you work in a position where accommodations can’t be made due to your position or that it would place an undue hardship on the company to make the accommodation then you can request unpaid time off under FMLA. In order to be eligible for FMLA, your company must have more than 50 employees and you have to have been with them for more than a year and worked at least 1,250 hours in the previous 12 months.

Many patients file for accommodations under ADA and FMLA–it's there to protect you. Make sure you have a thorough discussion about your needs with your specialist and request the appropriate paperwork for the program that best suits you.

There may be flexibilities in short term disability and unemployment claims. This may be something you want to look into, especially if your state is implementing any changes. 

I haven’t seen any data on how many people with a primary immunodeficiency have tested positive for coronavirus; where do I go for that information?

That information is not being uniformly reported, but several international organizations have joined forces to gather that data. The European Society for Immunodeficiencies (ESID), Le Centre de Référence Déficits Immunitaires Héréditaires (CEREDIH), and the International Patient Organisation for Primary Immunodeficiencies (IPOPI) are collaborating under the auspices of the International Union of Immunological Societies Inborn Errors of Immunity (IUIS IEI) Committee to create a survey for clinicians. In order to reach as many cliniciansco as quickly as possible, the survey was distributed globally on March 16 from various clinical immunological societies and national patient organizations (you can read IDF’s announcement to physicians here>>).  Dr. Kathleen Sullivan (a member of IDF’s Physician’s Advisory Committee) helped to create the survey. 

A more detailed survey will be sent out in approximately three weeks to physicians and medical directors who have reported PI patients who have tested positive. We will share reports as we receive them, though this may take many weeks.

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