How to Pay for the Tests and Care You or Your Child with an Autoinflammatory Syndrome Needs

pay for fever syndrome genetic testsTests and medications necessary to diagnosis and treat autoinflammatory syndromes are often denied by insurance companies. That’s unfortunately a reality of dealing with such rare diseases. Tests may be considered too expensive or not well understood and medications are often considered experimental. Also, many patients must travel, some out of the country, to see the doctors and researchers who are the most experienced with their condition. Here are some ways you can get help paying for the costs associated with yours or your child’s medical needs.

Appeal, Appeal, Appeal, and Appeal Again

You do not have to accept any denial of tests or treatment by your health insurance company as final. In fact, every single time your claim is denied, you can appeal the decision. And the more times you appeal a denied claim, the more likely it is to be approved. According to an October 2013 Forbes healthcare article, “After several re-submissions on your behalf, it becomes less advantageous for an insurer to deny your claim versus someone else’s new claim, and thus more likely for your claim to be approved. So, don’t give up.”

Join a Study

Joining a study benefits both the patient and science, which ultimately benefits other patients with the same condition. Often studies provide care, advice, and treatment at no cost to the patient or to the patient’s insurance company. In some cases, lodging and travel may also be available to the patient. In the U.S., there are two large autoinflammatory studies at the National Institutes of Health (NIH) in Bethesda, MD that many patients with fever syndromes are part of. There are also smaller studies at times found around the U.S. Several countries in Europe have ongoing studies for these diseases as well. For these periodic fever diseases, the researchers running the studies are some of the best and most experienced with autoinflammatory conditions.

The Autoinflammatory Alliance keeps updated information on autoinflammatory related studies. Click here to contact the Autoinflammatory Alliance directly to find out more and to learn which study or studies would be best for you to apply to.

Personal Fundraising Online

Several online sites allow you to raise money for personal uses., and FundRazr are some of the more popular sites. These are easy to set up. You fill out a section explaining what the money will be used for and give a background story. Then you can post your page online or in emails for others to see your story and donate directly to you. Before choosing a site to use, do read the fine print. Many sites will take a small percentage of the money raised to help fund the organization that runs the website.

Flexible Spending Accounts (FSA) and Health Savings Accounts (HSA)

Flexible Spending and Health Savings Accounts may be offered through your employer or through private insurance plans. These allow you to put away money on a regular basis tax-free to be used for approved medical costs. Approved medical costs can include prescription medication, medical tests, doctor copays, and even transportation and hotel costs if you need to travel long distances to medical appointments. These are a great benefit to you because they can save you money in taxes and provide an easy way to maintain a savings account for your medical costs. Do consult with a tax professional to determine how an FSA or HSA may benefit you as every financial situation is different and to understand the federal rules for using these accounts.

Ask for Airline Miles from Family and Friends

If you need to travel a great distance for medical treatment, asking friends and family members for airline miles is an option. Airline miles can often be transferred to other individuals. If you have a friend or family member who travels frequently, especially for work, they probably have airline miles accumulated. It may be hard to reach out and ask, but if you share why you need to travel such a great distance to see a doctor or go to a research facility, they may be more than willing to help.

National Patient Travel Center

The National Patient Travel Center helps patients find transportation to medical appointments and treatment centers.

Autoinflammatory Alliance Travel Partners

At times the Autoinflammatory Alliance has been able to partner with other charitable organizations that provide international travel for sick children to medical facilities in the US that are doing clinical trials for autoinflammatory diseases. We first will refer you to a clinical research program, generally at the NIH, and if they accept you, we have facilitated connections with the international travel assistance programs. Contact the Autoinflammatory Alliance for more information.


  1. Forbes: The 5 Things You Should Know When Your Healthcare Claim is “Denied” by Steve Brozak
  2. IRS: FSA and HSA Information

Top photo by Photo by zimmytws/

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