Between 2004 and 2007, Jaime Moy, a 38-year-old graphic designer in Waterford, Michigan, and her family were hit with a double whammy. Within that time period, both she and her young son Andy were diagnosed with psoriatic arthritis.
The disease affects their daily lives: Moy’s hands hurt simply from manipulating her computer’s mouse—something she does often in her photo editing work. And her son, who is now 17, couldn’t keep up with the other kids when he was younger and has opted out of gym class since the sixth grade. On top of that, her family has to worry about how to pay for their medications.
Luckily, they were eligible to join a state-run program that provides financial assistance for children with chronic health problems. “We’re very fortunate, but we’re in the minority. A lot of psoriatic arthritis patients can’t afford their treatments,” said Moy.
As we gather at the American College of Rheumatology Annual Meeting in San Francisco today to talk about medical advances that improving the lives of patients like Moy, we are reminded that these advances are moot if patients do not have affordable access to them.
While new treatment options may offer hope, insurers are placing these medications out of reach for those with psoriatic arthritis by categorizing them as “specialty tier” medications, meaning patients pay up to 50 percent of the cost.
The Moys’ monthly treatment costs top $7,500, which would be unaffordable for them without financial assistance. “If we weren’t eligible for that program, I honestly believe we would have filed for bankruptcy,” Moy said.
When patients can’t afford their medications, they are more likely to stop treatment. For those with psoriatic arthritis, this could lead to persistent inflammation, joint damage, physical limitations, disability and even a shorter life. Without her and her son’s treatments, Moy believes both of them would be spending most of their days in wheelchairs.
Insurers have no incentive to change their ways, since specialty tiering is profitable. It’s not surprising, then, that the percentage of employer health plans that use specialty tiers has increased from 3 percent in 2004 to 23 percent in 2013.
Today, Moy is working with the Arthritis Foundation and the National Psoriasis Foundation to find solutions. These organizations have joined more than 30 other advocacy groups to form the Coalition for Accessible Treatments, which has called for legislative action to improve patient access to treatments.
Some in Congress have heard their call. Earlier this year, Reps. David B. McKinley and Lois Capp introduced the Patients’ Access to Treatments Act of 2015, which aims to limit how much patients pay for specialty tier medications. So far, the bill has received 95 cosponsors.
It’s really sad when psoriatic arthritis patients have to choose between putting food on the table and taking their medicine so that they don’t get further joint damage.”
The bill could have a meaningful impact not only for the over 500,000 Americans living with psoriatic arthritis, but also the 13 million who have cancer, 1.5 million who have rheumatoid arthritis and 400,000 who have multiple sclerosis.
Insurers warn that such limitations would significantly increase premiums, but that argument doesn’t hold much water. A 2013 study has shown that limits would increase premiums by only $3 per year. The reason: specialty therapies only represent 2 percent of health spending in these plans.
The ball is in Congress’ court; there’s no good reason this bill should not be a priority. Moy and other patient advocates are encouraging their followers to contact their representatives in Congress and ask them support the bill.
“It’s really sad when psoriatic arthritis patients have to choose between putting food on the table and taking their medicine so that they don’t get further joint damage,” Moy said. “We can and should do more to help them.”