Dear friends,
This week marks the fifth anniversary of when COVID-19 officially was recognized as a global pandemic — an event that profoundly changed our lives.
Throughout that challenging time, PHA provided information, support and hope for our community. We kept you updated on vaccine development, enhanced our Empowered Patient Toolkit, launched a new webinar series and embraced technology to host online support group meetings.
During those difficult times, the PHA community embraced and embodied the resilience it’s shown since PHA’s founding in 1991. Patients shared ways to adapt and thrive while our health care professionals risked their own lives to care for others.
While we’ve come a long way since those uncertain times, new challenges now threaten access to affordable health care, critical research, and the well-being of the PH community.
Threats to health care and research funding
The White House has proposed $880 billion in budget cuts, directly affecting health programs, including Medicaid and the Children’s Health Insurance Program.
Medicaid is the US health insurance plan that provides coverage to many of our most vulnerable PH community members. Nearly one in four Americans receive health insurance benefits through Medicaid or CHIP. Almost half of them are children and many of the remainder are disabled or elderly, including countless of PH patients.
In addition, recent federal directives have disrupted the National Institutes of Health research, including PH studies. Researchers have had to halt projects or even lost their jobs, jeopardizing future breakthroughs in treatment. In addition to the immediate impacts, cuts to Medicaid and NIH research funding may impose a negative long-term impact on PH Care Centers. These centers would have to scale down or replace funding with other sources, including increasing the cost of care for all.
Take action: Make your voice heard
PHA is committed to advocating for policies that guarantee access to quality care. We urge you to join us in speaking out. Use our call and email templates to express concern about these proposals to your members of Congress.
PHA supports health care policies that:
- Prohibit discrimination against people with costly health conditions.
- Ensure clinical judgment and the patient-clinician relationship drive medical care.
- Expand access to accessible, affordable and adequate health insurance.
- Reduce barriers to care, including out-of-pocket costs, for those with complex conditions.
As a bi-partisan organization, PHA is committed to working with any administration that fully supports and embraces our patient-centered, health care principles.
Stay engaged
Your voice matters. Sign up to receive our monthly advocacy email to stay informed and engaged in protecting healthcare for the PH community. It’s important that we maintain the pressure and point out the unintended consequences of policy changes and budget cuts.
If you have any questions or concerns, please reach out. I always look forward to hearing from you.
With gratitude and respect,
Matt J. Granato, LLM, MBA (he/him)
President and CEO
