HURRICANE – One in 5 Americans including children suffers from some form of arthritis – an estimated 394,000 Utahns and 52 million Americans.
Sarah Cloud of Hurricane is fighting for people with arthritis. She is a platinum ambassador for the Arthritis Foundation and traveled to Washington, D.C., in March to advocate for her cause, even though her own son is in remission from arthritis.
Sarah Cloud’s 18-year-old son, Chris Cloud, was previously diagnosed with juvenile arthritis. In March 2015, she spoke to St. George News about her family’s struggle to pay for the medication Enbrel despite having two full-time wage earners in the family and private insurance.
Read more: Family struggles to pay son’s medication costs; highlights ‘specialty drug’ woes
Chris Cloud needed the medication to treat his enthesitis-related, or juvenile, arthritis and to prevent permanent damage from the disease. The Clouds’ story highlights trouble many Americans have paying for specialty medications that are classified into tiers by insurance companies.
The full cost of Enbrel, a biologic used to treat autoimmune disorders like juvenile arthritis, was $3,000 per month. The Clouds had to pay out-of-pocket until their deductible was met; then the copay went to more than $600 per month.
For the Clouds, this often meant choosing between necessities like groceries or house payments and their son’s medication.
Gratefully, Sarah Cloud said, her son is now in remission, although doctors don’t know how long that will last. As an 18-year-old, he made the choice to stop the medication against doctors’ recommendations.
“They get to that age where we have to remember that they are young adults, and these are their decisions,” Sarah Cloud said, “whether (or not) we agree with them.”
Sarah Cloud continues to advocate for the Arthritis Foundation by fundraising and letter-writing like other advocates; but as an Arthritis Foundation platinum ambassador, she is also tasked with forming relationships with elected officials at the state and federal level, Laura Keivel, manager of grassroots advocacy for the Arthritis Foundation, said. “And she’s been very successful at that,” Keivel said.
Sandy Preiss, Arthritis Foundation national vice president for advocacy and access praised Sarah Cloud’s work.
“We’re very proud of her accomplishments at the Arthritis Foundation,” Preiss said. “She really is a terrific advocate.”
Sarah and Chris Cloud’s trip to the District of Columbia in March joined nearly 400 other advocates from 46 states for the 2016 Arthritis Foundation Advocacy Summit.
At last year’s summit, the foundation supported federal legislation which would have limited cost-sharing requirements for specialty medications and reduced excessive out-of-pocket expenses. The proposed legislation, the Patients’ Access to Treatment Act of 2015, did not pass.
“What we learned (in 2015) is that those issues seem to be better discussed at the state level than at the federal level,” Preiss said.
While in the District of Columbia, advocates asked legislators to co-sponsor arthritis legislation, join the Arthritis Caucus and fund needed research.
“The Arthritis Caucus is made up of members of Congress from both parties that have self-identified as being interested in issues related to people who have arthritis,” Preiss said. Reps. Rob Bishop and Chris Stewart belong to the caucus, and Preiss credits Cloud with Stewart joining a year ago.
Advocates also asked for more funding to be dedicated to arthritis research, Preiss said.
“We’ve done some research ourselves at the Arthritis Foundation and found out that 1 in 3 veterans have doctor-diagnosed arthritis,” Preiss said.
“We think there should be more money dedicated to researching why our veterans are having this experience.”
While 1 in 5 Americans have diagnosed arthritis, Preiss said, veterans suffer even more. According to an Arthritis Foundation study, higher arthritis rates among veterans and military personnel are believed to be caused by factors like combat injuries and carrying 60-100 pound packs.
Arthritis advocates are also asking Congress to add pediatric subspecialties to the National Health Service Corps.
“The National Health Service Corps, from what I understand, will forgive college loans for certain medical specialties (such as) family physicians who are willing to serve underserved rural areas,” Sarah Cloud said.
The goal, she said, is to get pediatric subspecialties added to the list of specialties eligible for the program in the hopes of producing more doctors in rare and needed areas of expertise such as pediatric rheumatology, pediatric endocrinology and others.
“What’s happening is the median age of pediatric rheumatologists is now in their 60s,” Sarah Cloud said.
With those doctors nearing retirement, she said, something needs to be done to increase the number of available pediatric specialists.
“Here in Utah we are blessed, we have a wonderful pediatric team at University of Utah, at Primary Children’s,” Sarah Cloud said, “but at the same time, I drive 300 miles for a doctor’s appointment.”
Other families in the local region travel even farther because there are no pediatric rheumatologists in Nevada, Idaho, Montana or Wyoming.
“So you have a five-state area that is actually feeding into Primary Children’s … or into Seattle, or L.A. or Phoenix,” Sarah Cloud said. “We have families in Alaska that fly into Seattle (for treatment).”
“Improving access to the specialties and to the physicians increases the outcomes for our kids,” Sarah Cloud said.
Sarah Cloud stressed the importance of having support from other families and encourages anyone who would like to get in touch with her to contact her by email.
Resources
- Arthritis Foundation website
- Arthritis Foundation Utah Web page
- Arthritis Foundation advocacy information web page
- 2015 HR 1600 Patients’ Access to Treatments (proposed) Act of 2015 – did not pass
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