The Heavy Financial Burden of Living With a Rare Disease

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by Mark Harrington |

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Here in the United States, the richest nation in the world in terms of nominal gross domestic product, medical expenses are the No. 1 cause of bankruptcy. People in the rare disease community are well aware of this and among the hardest hit.

Seven years ago, I went to the pharmacy to pick up a prescription for my mother. Ma was fortunate. Her several chronic conditions required expensive, lifesaving medications, but she retired with a generous pension that included prescription drugs.

Ahead of me in line was an elderly woman whose prescriptions totaled $67. She didn’t have the money and turned to leave, so I quietly paid her total.

That incident is seared into my memory. I once read that U.S. healthcare is the best in the world, but is it of any value if people can’t afford to access it?

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Last month, I underwent intravenous immunoglobulin therapy to treat my myasthenia gravis (MG). The Gamunex-C medication alone cost $25,000, and with additional costs, my bill totaled $26,265.

I have a surgery scheduled for July 19. In preparation for it, I had to undergo oral surgery on June 1. Because I have employer-provided health insurance, my out-of-pocket cost was $3,605 instead of $30,625.

I’ve spent my adult life teaching in Texas, where the average teacher salary for the 2019-2020 school year was $57,091, according to Insider. When taxes, Medicare, life insurance, union dues, and other miscellaneous costs are deducted, my salary is reduced substantially. Then there are my health insurance premiums, which total $4,464 a year.

That amount would be a bargain if I didn’t also need to pay co-pays and deductibles and reach my annual out-of-pocket maximum. In total, I pay $11,914 a year for healthcare. If I had my spouse and children on the plan, the total would be more than $30,000. These figures are not outliers. Teachers in every state are faced with similar or worse situations.

Due to MG complications, I have been on medical leave since Sept. 1. While the disability insurance I purchased helps, it only replaces two-thirds of my salary, while my living expenses have either remained static or increased. It took four months for me to receive my first disability payment. That’s four months without income!

These unexpected financial setbacks were devastating. My credit rating tanked, and my savings were wiped out. No matter my health, I’ll be forced to return to work this August, or else face unemployment and lack of health insurance.

The annual cost of rare diseases in the U.S. was nearly $1 trillion in 2019, according to a study released by the EveryLife Foundation for Rare Diseases. But this problem is not limited to the United States, as rare disease patients across the world face financial problems directly related to medical costs.

I’m lucky that my family has resources to help; they’ve saved me from complete financial ruin. But what about my compatriots in the rare disease community who aren’t so fortunate?

New, lifesaving treatments for rare diseases are constantly being developed and put on the market. Many dreams for recovery are now close to reality.

As Ségolene Aymé, founder of the Paris-based rare disease internet portal Orphanet, explained at the 2018 World Orphan Drug Congress in Barcelona, “[T]he number of very promising molecules in development is increasing. We already know that what was once considered possibilities in the past are now realities, and that with technological advancements and increased knowledge about rare diseases, we are going to be able to treat most of these diseases in the future.”

Sounds so hopeful! Yet there are no guarantees that those of us who need the treatments — and who may die without them — will be able to afford them when they become available. Will we one day be in line at the pharmacy, unable to pay?

I wish I could end on a note of hope, but I fear that economic hardships, many of which are the result of healthcare costs, have created conditions ripe for social chaos. To paraphrase Margaret Atwood, the United States isn’t exempt from the economic rules that govern societies. Those of us in the rare disease community must lead the way in attempting to address these difficult financial issues.


Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to myasthenia gravis.

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