Patient Advocate Spotlight: Sarah Truman

4.4.16

Sarah Truman moved to Portland, Oregon, in 2011 hoping to find better health care. In the years prior, doctors had diagnosed her with psoriatic arthritis, followed by fibromyalgia and a hypothyroid condition as well. These conditions eventually led to her contracting autoimmune hepatitis.

Managing health problems such as these requires a costly and involved treatment regimen.

Having multiple conditions requires her to take a number of pills on a daily basis. On a good day, she takes nine pills with breakfast, another two at lunch and six more at dinner. On days when her symptoms are particularly bad, the quantity is even higher.

The drugs aren’t cheap either. Even with health insurance, co-payments can be astronomical. The cost of one biologic medicine she’s prescribed is $19,000 every four weeks.

Without co-pay assistance programs, her medicine would likely be unaffordable, she said: “$20,000 a month, are you kidding me?”

Yet the drugs are crucial to her ability to function.

“I would be in a wheelchair without them,” she said.

Hundreds of thousands of chronic disease patients – whether with conditions like Truman’s or others such as kidney disease, hemophilia, leukemia and cancer – turn to nonprofits that offer premium and co-pay assistance in order to afford their treatments. It’s not a choice for these patients – it’s a matter of life or death.

Needing a lifeline in the form of third-party support helped lead Truman to become in advocate for others in situations like hers. Since 2013, she has been participating in education efforts: helping to teach doctors about speaking to patients about chronic diseases, helping patients to discuss their health needs at their places of work, traveling to Washington, D.C., to speak about prescription drug issues, meeting with Sen. Jeff Merkley and Sen. Ron Wyden, appearing before an FDA panel.

Unfortunately, even as Truman and others advocate on behalf of patients across the country, insurance companies continue to pursue policies that can cause them harm, including by rejecting the third-party premium assistance programs Truman looks to for support, and by forcing patients to say they won’t accept assistance from any third party as a condition of their coverage. This is patient discrimination by insurers.

The Chronic Disease Coalition applauds advocates such as Sarah Truman for working to protect herself and all patients living with chronic conditions. Together we can make a difference and protect patients’ access to the treatment they need to live.