At Senator Collins’ invitation, Patricia Bernard explained her experience with RA and concerns with the cost of treatment
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Washington, D.C. – Patty Bernard, a resident of Falmouth, Maine, has lived with rheumatoid arthritis (RA) for more than 25 years. At the invitation of U.S. Senator Susan Collins, the Chairman of the Senate Aging Committee, Mrs. Bernard testified at a hearing today focused on therapies for this chronic autoimmune and inflammatory disease and the effect of rising costs of treatments for RA patients, particularly older Americans. Mrs. Bernard explained how she had successfully managed the symptoms of her RA with a prescription called Enbrel, until she retired at age 79 and moved from her employer-sponsored insurance coverage to Medicare. That’s when she discovered that her out-of-pocket cost would increase from $10 to $3,800 per month if she continued on Enbrel.
RA, which attacks the lining of joints, is the most common form of autoimmune arthritis, affecting more than 1.3 million Americans, including more than 8,700 in Maine. Untreated, this disease can lead to permanent joint damage, and it is associated with significant morbidity and mortality.
“Treating rheumatoid arthritis costs the U.S. health care system an estimated $19 billion a year. The cost of the drugs used to treat the disease continues to go up. For example, over a five-year period, the cost of one biologic, Humira, increased by 100 percent from $19,000 to $38,000 per year after rebates. As a result of the increasing costs of these drugs, we hear of the struggles of older Americans like Mrs. Bernard who face not only the pain of the disease, but also the financial pain associated with maintaining treatments,” said Senator Collins. “Today’s hearing helps us to better understand what can be done to moderate the price of prescription drugs without discouraging the innovation that helps us live healthier lives.”
After experiencing years of constant “excruciating pain” that made daily tasks “difficult, often impossible,” Mrs. Bernard went to see a rheumatologist when she was 55 years old. The doctor diagnosed Mrs. Bernard with RA and informed her that it had inflamed 79 percent of her body. After trying a variety of treatments with limited success, Mrs. Bernard became one of the first Mainers to be prescribed Enbrel, a biologic therapy that hit the market in 1998.
The effect of the medication was life changing, and she took it for nearly two decades, never paying more than $30 per month through her employer-sponsored health insurance. Upon retiring last year, however, Mrs. Bernard learned that on Medicare she could no longer afford Enbrel. She described how her rheumatologist worked with her to help her find an affordable option.
“[My doctor] suggested a treatment called Remicade. It was not self-administered like Enbrel. Instead, I would have to go into the doctor’s office to receive the infusion. Worse, there was no way to know whether or not it would work,” said Mrs. Bernard. “I was scared. I knew that Enbrel had worked well for nearly two decades, and stopping it felt like going backwards. I even called Medicare, and told them, ‘I don’t understand. I am actually saving you money by administering the Enbrel myself.’ They said that’s the way it is.”
Fortunately, Remicade has successfully managed Mrs. Bernard’s RA for the past year, but it is not as convenient as Enbrel, which Mrs. Bernard had self-administered for nearly the past 20 years. Instead, she now has to go into a doctor’s office once a month for an infusion that can take up to 2.5 hours.
Senator Collins raised concerns that Enbrel, which has been on the market for decades, and Humira, which was approved to treat RA in late 2002, remain extremely expensive. Although the FDA has approved biosimilars for both therapies, they have yet to come to market, which would help drive down prices or at least curb price increases. One possible cause is that these drugs have been covered by numerous patents, many of which were added in recent years as other patents approached expiration.
Witnesses for today’s hearing included:
- Patricia Bernard, Retired, Rheumatoid Arthritis Patient (Falmouth, ME)
- Dr. William F. Harvey, MD, MSc, FACR, Clinical Director of the Arthritis Treatment Center, Tufts University School of Medicine (Boston, MA)
- Dr. Jack Hoadley, PhD, Healthy Policy Analyst and Researcher, Georgetown University (Washington, D.C.)
- Terry G. Mahn, JD, Managing Principal of Fish and Richardson’s Office and Regulatory and Government Affairs Practice Group Leader (Washington, D.C.)
Click HERE to read their testimonies.