As the heart of the pulmonary hypertension (PH) community, the Pulmonary Hypertension Association (PHA) advocates on behalf patients and caregivers while also empowering them with the resources necessary to actively champion for access to the treatment and care they need and deserve. Faced with new challenges and opportunities this year, PHA is escalating our efforts to both represent the community and ensure that our members have tools to help them make PH advocacy personal.

We are your eyes, ears and voice in Washington, D.C., working with all involved to ensure that PH patients’ interests are represented. As an association with both patient and professional members, but led by those living with the disease, we are able to approach our advocacy from a unique positon. Our fight has and always will begin with stories of those affected by PH. To that end, this year, we have launched new web tools to help patients, caregivers, health care professionals and other PHA supporters share their personal accounts of how PH impacts people’s daily lives. These stories fortify our fight for legislation, policies and regulations that improve and extend patients’ lives and increase funding for PH research.

Fighting for Quality, Affordable Healthcare Coverage

With discussions underway on Capitol Hill about the future of the Affordable Care Act, rest assured that PHA is front and center. Our fight has not changed. Whatever the packaging, we are advocating for continued high-quality coverage that is affordable and effective that does not exclude those who have pre-existing conditions. Coverage should limit out-of-pocket costs, eliminate caps and allow parents to keep their children on their plan until age 26. Effective health care policy requires engagement with people who, like the PH community, represent all political perspectives. Whatever side of the aisle you or elected officials represent, PHA has created tools to help you share your story in a manner that makes the PH community an effective part of the process. Ask your Members of Congress to fight for critical healthcare protections.

Advancing PH Education and Awareness

PHA leads efforts to leverage national resources to support the advancement of patient care and research. Our most recent effort is our work to create a PH program at the Centers for Disease Control and Prevention (CDC). There are now 14 FDA approved treatments for PH, but too many patients continue to be misdiagnosed. Individuals still wait more than two years on average for an accurate PH diagnosis. A PH education, awareness and epidemiology program at the CDC would help improve life-expectancy and quality of life for people living with PH. In order for a program like this, which is so critical to the PH community, to be a priority at CDC, Members of Congress need to ask for it. We will soon add new tools to our Advocacy page to assist you in asking your Member of Congress to support a CDC PH program and other activities to promote early and accurate PH diagnosis.

Advancing Research

Strategic partnerships are especially important in PHA’s work to advance PH research. As the result of a major investment with the National Heart, Lung and Blood Institute (NHLBI) of the National Institutes of Health (NIH), we are in the first phase of a groundbreaking clinical study, the Redefining Pulmonary Hypertension through Pulmonary Vascular Disease Phenomics (PVDOMICS) program. By collecting information from one thousand participants with various types of PH, and 500 participants without or at risk for PH, PVDOMICS hopes to deconstruct the traditional classification and define subclassifications of patients with PH, which could be a major step in advancing patient care.

Empowering the Community with Patient Assistance Program Information

Access to care has been a cornerstone of PHA’s patient advocacy since our founding. With changes in eligibility criteria, we are working with a number of non-profit organizations that provide assistance to help rare disease patients pay premium and co-insurance costs. This year, we have also engaged directly with industry to reinforce the importance of and growing need to expand patient assistance programs – those managed by drug manufactures, themselves, as well as independent nonprofits that rely on their funding to support patients’ needs. To ensure that our community knows what’s available when, we are committed to providing timely updates on important developments from the Caring Voice Coalition, Good Days Foundation and other funding assistance organizations. We also advocate in Congress and federal agencies to protect and enhance the value of patient assistance programs. You can be a part of this effort by sharing your story here.

As an association with members in the patient, health care professional and scientific communities, PHA holds itself accountable to being the PH community’s chief advocate. If you are already involved in our community’s advocacy efforts, thank you, and please keep up the fight. If you are new to PHA or have not yet been involved in our advocacy efforts, please know that your voice, particularly when joined with others in the community, makes a difference.

As I continue to update you in my monthly CEO Update on our work to serve the community, I invite you to share your concerns, questions and ideas with me at BradWongPHA@PHAssociation.org.