FALMOUTH — Without treatment the pain of rheumatoid arthritis makes it nearly impossible for sufferers to do simple daily tasks from getting dressed, to pouring a cup of coffee, to walking the dog.
The autoimmune disease causes inflammation in the joints and can lead to painful deformity and immobility.
Falmouth resident Pat Bernard knows all about the impact of rheumatoid arthritis, commonly referred to as RA. She was diagnosed with it 25 years ago and worked well past normal retirement age so that she could keep her health insurance, which covered the cost of treatment.
Under her workplace health insurance plan, the monthly cost for her Enbrel prescription ranged from $10 to $30 a month, depending on the insurance provider.
Prior to taking Enbrel, Bernard said she was in “excruciating pain, day in and day out. The pain made ordinary tasks difficult if not impossible.”
But, she said, with the drug, “I felt so much better. It truly gave me my life back. I was no longer aching and in agony. I was finally able to live an ordinary life and I started taking the stairs just because I could.”
But once Bernard, who is now 80, retired last year, the cost of the Enbrel treatments were so high she was forced to switch to another method of managing her RA.
Medicare doesn’t cover the cost of Enbrel and Bernard’s out-of-pocket expenses for the drug ballooned to $3,800 a month – a price she simply couldn’t pay.
Bernard worried that she could end up in a wheelchair and might have to sell her house. The anxiety caused her to end up in the hospital several times until her rheumatologist “went out of his way” to help her find an affordable replacement.
Bernard now gets monthly infusions of Remicade, but she can no longer administer the dosage at home, like she could with Enbrel. So she drives to the doctor’s office, which can be inconvenient and time consuming because each session lasts at least two hours.
Even so, this week Bernard said she has much to be grateful for, including that the Remicade is working. She feels “fit as a fiddle” and can maintain her activity level, she said, which includes water aerobics, working in her garden and attending church.
Bernard was asked to tell her story during a Feb. 7 hearing in Washington, D.C., held by the Senate Aging Committee chaired by U.S. Sen. Susan Collins, R-Maine.
In her opening statement, Collins said treating RA costs the U.S. health-care system an estimated $19 billion a year and that the disease affects approximately 1.3 million Americans, including more than 8,700 in Maine.
But with the increasing costs of the prescription drugs that treat RA, Collins said, “We hear of the struggles of older Americans, who face not only the pain of the disease, but also the financial pain associated with maintaining treatments.”
Bernard said she was honored to be invited to speak to the committee.
“If I can help just one person with my story it would be wonderful,” she said. “I told the committee we are being held captive by the drug companies who should be asking what they can do for us.”
Bernard is a widow with two children and three grandchildren and said while she may be a senior, it’s still important to her to be able to be productive, which she couldn’t do without specialized treatment for her RA.
While she understands that drug companies spend a lot of money on research, and manufacturing, she called the high costs for many prescriptions “simply greed.”
Collins acknowledged that if “we want new medicines to reach consumers who need them, the companies that invest in the research and take the risks necessary to develop these drugs must see a fair return on their investment.”
But, she said, “At the same time, we cannot be blind to the costs of these drugs, nor to cases where patent laws are manipulated to preserve monopolies.”
Bernard said since she returned home from Washington she’s been flooded with phone calls congratulating for her courage in speaking out.
“I was nervous until I sat down and began to speak,” she said. “I just told my story.”
Maine Sen. Susan Collins, left, with Falmouth resident Pat Bernard. Collins invited Bernard to D.C. last week to talk about the high costs of prescription drugs.
Falmouth resident Pat Bernard spent Feb. 7 testifying in front of the Senate Aging Committee in Washinton, D.C. Bernard was invited by U.S. Sen. Susan Collins, R-Maine, to talk about spiraling rheumatoid arthritis drug costs.