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New Patient Advocacy Coalition Leads the ‘Next Generation of Health Care Reform’

Advocacy News

HFA recently became a charter member of Partners for Better Care (PBC), a nonpartisan coalition of patients and patient groups that seeks to improve access to quality medical care. The following is a press release from PBC about this partnership.


Patient advocacy groups announced on Thursday, December 3, the launch of Partners for Better Care (PBC), a nonpartisan coalition beginning with over 10 million patients who seek to advance a common goal: better health care for all Americans.

“High quality medical care is available in the United States, but many Americans are unable to access the care they need,” said Mary Richards, Executive Director of Partners for Better Care. “Access to affordable, patient-centered care is critical.”

Statistics show that for most Americans, affordable, patient-centered care remains out of reach. Among insured adults in 2014, 20 million had a medical problem and did not visit a doctor or clinic, 12 million did not get needed specialist care, and nearly half of middle class workers skipped healthcare services or fell into financial hardship because of health expenses. [Commonwealth Fund, January 2015]

Seeking to improve health care in the U.S., PBC’s inaugural members—AIDS United, American Liver Foundation, Amputee Coalition, the Christopher & Dana Reeve Foundation, Hemophilia Federation of America, The MAGIC Foundation, National MS Society, Parkinson’s Action Network and United Cerebral Palsy—all bring to the initiative strong and effective patient advocacy leadership.

Following launch, Partners for Better Care announced that their first step as a coalition will be the release of a Patient Charter. This will outline grounding principles for action to improve availability, transparency and affordability of health care for all. PBC members plan to focus the Charter across six areas: predictable, manageable out-of-pocket costs, and limited cost shifting; transparency of cost and quality information; provider network adequacy; reasonable health system costs; fair and stable formularies and equitable access to therapies; and an easy, quick, fair and understandable appeals process.

Michael Kaplan, President and CEO of PBC inaugural member, AIDS United, explained the need for improvements to patient care:

“AIDS United is proud to be a founding member of Partners for Better Care. After more than three decades of HIV impacting the U.S.—and more than 1.2 million Americans now living with HIV—we’ve finally reached the point where we have the science and treatment to both extend the lives of those of us living with HIV to rival that of the uninfected, and to stop new infections. Today, the solution is about access to care and treatment—and it can only be realized through transparent and comprehensive health care, fair and equitable access to medicines, assuring patients’ rights to dignified and culturally competent care, and through stable and reasonable costs. At AIDS United, we believe this can all be achieved through collective voice and working across diseases— we believe this can be achieved, and that PBC will provide us a critical path to ensuring so.”

While Partners for Better Care seeks to improve health care for all Americans, each member organization is also driven to improve the system for the patient groups for whom they serve as advocates:

“We at the Christopher & Dana Reeve Foundation are proud to advocate for the next generation of health care as members of Partners for Better Care. We are determined to use this opportunity to work towards a higher quality of life for all Americans, particularly those who are living with paralysis, through creating a more patient` centered health care system and improving access to better treatments,” said Maggie Goldberg, Vice President of Policy and Programs, Christopher & Dana Reeve Foundation.

Bari Talente, Executive Vice President of Advocacy at National MS Society added:

“The National MS Society is pleased to be a founding member of Partners for Better Care as their goals align with the Society’s own Access to High Quality MS Healthcare Principles. We are proud to partner with other organizations to improve quality healthcare for all Americans, especially those living with a chronic disease. By working together, we can bring meaningful change so people get affordable access to the healthcare they need.”

Initial support for the coalition was provided by Novo Nordisk, consistent with their belief in multi-stakeholder cooperation to achieve optimal patient care.

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