The Pulmonary Hypertension Association (PHA) has shared the results of its recent National Call-In Day, reporting that the event was a major success thanks to the participation of the pulmonary hypertension community. The National Call-In Day took place on April 16th as part of an initiative to encourage PH advocates to call Congressional members and urge them to support funding for addressing the disease.
Advocates from the PH community who participated in the initiative helped support efforts to pass the Patients Access to Treatment Act (PATA), a proposed bill that is expected to reduce costs of PH medication and increase access to novel therapies. Throughout the day, 17 support groups distributed National Call-In Day postcards, while 51 legislative offices were called by PH patients and advocates.
In addition, the PHA announced that during the first two weeks of calls, 11 Congressional members agreed to co-sponsor PATA. The association is actively working to increase advocacy and awareness for PH, and in addition to asking its members to call Congress, the PHA also invites everyone to spread their stories about the disease through social media, download advocacy materials at PHAssociation.org, and answer a four-question survey on the impact of initiatives such as National Call-In Day.
The association has been publicly supporting PATA, which is currently being debated in the U.S. House of Representatives. The bi-partisan legislation was presented by representatives David B. McKinley (R-WV) and Lois Capps (D-CA) and is designed to reduce the cost-sharing requirements of therapies for diseases such as PH. The legislation is expected to decrease specialty tier cost-sharing requisitions in order to make life-saving drug treatments more accessible and decrease health care costs for patients.
The PHA argues that PATA could change the lives of thousands of people who suffer from the rare and debilitating lung disease by ensuring that a larger pool of patients have access to top-shelf medication at lower prices. Despite the fact that there is no cure for the disease, therapy can significantly improve patients’ quality of life, who have an estimated survival rate of 2.8 years if not treated.
Advocating is an important part of the work developed by the PHA, which recently awarded 12 community activists with the 2015 Tom Lantos Innovation in Community Service Award. The awardees are leaders of projects committed to raising awareness about PH, and the Tom Lantos Innovation in Community Service Awards were created in order to support new ideas and opportunities among the PH community and help advance both research and awareness regarding the disease, for which there is currently no cure.