How US Health Insurance Practices Can Harm Rare Disease Patients ?

 

The US healthcare system is collapsing. There is nothing surprising in this statement. But as a result, every day people die: friends, neighbors, family members. A recent event in my life is a painfully clear reminder of this. Before I was diagnosed with myasthenia gravis (MG), I believed the solution was to see a doctor when I was sick. Your doctor will then perform an examination, possibly order some tests, make a diagnosis, and prescribe treatment. I believed that the doctor's knowledge would be the driving force behind this process.

Unfortunately, this is not always the case. Every decision, every prescription, every test is checked by the insurance company. Benefits, not patient health, often drive these assessments. According to an article published in AARP in 2009:

The U.S. Department of Labor magazine estimates that about 200 million of his 1.4 billion health insurance claims filed each year are denied.

Denial has consequences. A 2022 press release on insurance practices by Pharmaceutical Research and Manufacturers of America stated:

“43% of people taking prescription drugs have faced at least one insurance barrier for themselves or their family members in the past year. from waiting to approve a prescribed drug (pre-approval), to requiring a payer to try another drug (first fail), or to one drug prescribed by a doctor (form restriction). is related to the fact that 89% of people say taking medication helps them stay healthy.” 

Long and Hard Battle

Taking high-dose prednisone to treat MG resulted in avascular necrosis in both hips, requiring total hip replacement. For most people, this is a routine procedure. However, patients with MG face unique surgical and rehabilitation challenges.

I was thrilled to learn that my neurologist prescribed the MG treatment Vyvgart (Efgartigimod) as part of my postoperative routine. I thought it could be a game changer for us. Seven months passed between the first prescription and my first infusion.I was hospitalized three times during that time. When I wasn't in the hospital, I spent hours at my desk thinking about how to welcome Vivgard.

We spoke with insurance agents in Dallas, Boston, and Los Angeles, as well as employees at some great manufacturers. I felt like Alice in Wonderland - things got more and more confusing every day. My neurologist and her team also worked to get approval. Like me, they didn't succeed.

Eventually, my insurance agent informed me that they had approved the medication for me, but not the nurse or the supplies to administer the hour-long IV. I asked what I could do with the $150,000 Vyvgart they sent me. My only option seemed to be to hire a private nurse that would cost $9,000. At that time, I was in poor physical condition with MG. She couldn't speak, swallow, or eat, so her sister had to take her on a conference call so I could hear her on the phone. I gave myself up to failure. Six days before Christmas she packed her bags and got ready to go to the emergency room.

Call it a Christmas miracle, but before I dialed her 911, my neurologist called me to let me know I had Vyvgart delivery and IV clearance. A course of IV immunoglobulin therapy may keep my condition from deteriorating and stabilize it until Vyvgart IV is started. All I had to do was pay the $4,000 deductible.

Something Is Wrong Here

We can talk about the 45,000 Americans who die each year because they do not have health insurance. It may be estimated that it ranks 22nd out of 27 high-income countries in terms of Possibly, “Barriers created by insurers to practice have led almost half (48%) of primary care physicians to consider quitting medicine, and 67% of health professionals to recommend a career in medicine.” No, according to a 2018 study conducted by the Aimed Alliance.

Perhaps here in Texas the average salary for a teacher is $58,887 for him, and you have to consider that teachers like me pay hundreds, maybe thousands, of dollars a month for health insurance. These figures do not include deductibles and maximum deductibles that can add thousands of dollars to your annual health insurance premium. How does this affect someone who cannot speak, swallow, eat, walk, or leave the hospital? I live with the consequences of these problems.

All of us in the rare disease community are greatly impacted by insurance decisions. We can and must do our part to solve these problems. Our quality of life is at stake. And in many cases our lives are at risk. 

Share :