Lupus organizations announce groundbreaking collaborative initiative to inform lupus drug development.
The Lupus Foundation of America Helps Pave the Way for Access to Future Lupus Treatments
More than 250 lupus activists from across the country came to Washington, DC in late June and approximately 3,500 online lupus activists have told their lupus story in support of H.R. 460 - the Patients’ Access to Treatments Act (PATA) sponsored by Rep. David McKinley (R-WV) and Rep. Lois Capps (D-CA). If passed, PATA would help improve access to life-saving treatments for millions of Americans with chronic diseases and conditions, including lupus.
In further support of the bill, the Coalition for Accessible Treatments of which the Lupus Foundation of America is leading member, and Avalere Health, a healthcare advisory firm, just released a new study at a briefing on Capitol Hill showcasing the importance of H.R. 460 on commercial health insurance premiums and other drug tier cost sharing. The study reveals that the bill would have a negligible impact on insurance premiums, increasing premiums by only $3 per year, absent any other changes to the average benefit design, and affect a relatively small number (14 percent) of commercial health plans that use specialty tiers.
The Coalition for Accessible Treatments brings together patient advocacy and health care provider organizations with the goal of passing H.R. 460. PATA would limit cost-sharing requirements applicable to treatments in a specialty tier enabling patient access to treatments.
“The Lupus Foundation of America strongly supports the Patients’ Access to Treatment Act (H.R. 460), and we are pleased to have this new study information in hand as we take to Capitol Hill to speak with members of Congress about the importance of supporting the bill,” explains Sandra C. Raymond, President and CEO of the Lupus Foundation of America. “People with lupus need and deserve an arsenal of treatments. We have waited far too long for new treatments to come to market, and specialty tiers and co-insurance place a significant barrier to accessing new and emerging treatments for lupus.”
The first drug designed to specifically treat lupus was approved by the Food and Drug Administration (FDA) in March 2011; and, today, more than 30 companies are exploring new lupus treatments. However, developing new and innovative drugs can cost millions of dollars. Because of these costs, health insurance companies place these vital, life-changing and life-saving medications on a specialty tier and charge a co-insurance or percentage of the cost of the drug, placing a substantial financial burden on patients who need these drugs. Receiving proper treatment can help people with lupus maintain daily function, remain in the workforce, raise their families and improve overall quality of life. The practices of specialty tiering and co-insurance are placing medically necessary treatments out of reach of millions of Americans.
The Foundation is committed to ensuring people with lupus have access to their treatments and to passing the Patients’ Access to Treatments Act. We must work together and tell the lupus story and urge Congress to pass this important bill.
One of our key goals is to ensure people with lupus have access to the care and treatments they need. Recently, access to a few vital treatments has been challenging to obtain, specifically access to quinacrine, hydroxychloroquine, and Benlysta®.