My name is Ruth Rinehart, and I have lived with primary immune deficiency for over 25 years. The deficiency is complex and causes a variety of symptoms from fatigue to muscle and joint pain, asthma, and frequent viral infections. To treat my symptoms, I have been given a Gamunex-C infusion every three weeks for 24 years.
These infusions are expensive, running between $3,000 and $4,000 each time for a total of more than $52,000 a year. I need them to live, but they have made my life very difficult from a financial standpoint. The high cost of Gamunex-C has meant my husband and I need the most expensive health insurance plans. I am a planner, and I put myself through nursing school so I would have a profession I loved while being able to provide a secure financial future for my family. But the high price of Gamunex-C has made such financial stability impossible.
When my husband became ill and subsequently lost his job, we could not longer afford my medication. We filed bankruptcy and lost our family home. Despite being of retirement age, I went back to work in order to afford the expense of my medications. The disease alone is devastating but the cost of the treatment adds to that devastation tremendously.
But perhaps the saddest part to me is that my story is not an anomaly. As a nurse and a patient advocate, I see patients frequently who cannot afford their medications. Many lose their marriages and families due to the stresses and costs of their treatment. As for me, instead of having a retirement savings we were on track to have before my illness, we are living month to month on social security and now on my income from returning to work.
As a patient who is reliant on the services of Medicare Part B and continues to the pay the price for drugs for which Medicare cannot negotiate, I am strongly in favor of the Trump Administration’s proposal to lower Part B drug prices. I appreciate that the Administration is advocating for patients by working to bring prices more in line with other wealthy countries. This plan would help directly to bring down my drug prices as well as those of many of my patients.