Nonprofit health organizations hopeful State of the Union Address will encourage awareness, support
The upcoming State of the Union Address has the health care industry anticipating support from President Obama as he revisits the progress made in health care, along with the necessity for more growth.
Nonprofit organizations, such as HealthHIV and Action CF, are hopeful that Obama will support efforts to increase public awareness and research for precision medications to support quality of life and increase life expectancy.
“The president can reinforce the focus on pursuing new medical breakthroughs by highlighting some of the major medical discoveries made this past year, including new treatments that cure hepatitis C as well as treatment to prevent HIV infection,” Brian Hujdich, HealthHIV executive director, recently told Patient Daily. “We should raise the public's awareness of the exciting possibilities and potential to significantly improve public health — and the state of our union — through medical discovery and innovation, informed through successes in addressing the HIV and HCV epidemics.”
It is that “providers and patients — not insurance companies — need to be empowered to determine which medicines work best to manage their condition,” Hujdich said.
Hujdich explained that “modern pharmaceuticals have transformed an HIV diagnosis from a death sentence to a manageable chronic condition. For people living with HIV and other chronic conditions, access to effective and proven treatment regimens is essential.”
Hujdich also told Patient Daily that the health care nonprofit sector is a “critical but sometimes overlooked part of the health care ecosystem. Nonprofits bring together patients, consumers, patient advocates, clinical and service providers and others to engage with industry in identifying research needs and priorities and defining what medical discovery and innovation mean to them.”
To increase medical progress, Hujdich would like to see more support between the private sector and patient and consumer advocacy groups to “re-energize and prioritize the medical discovery agenda, especially during this time of chaotic and critical change in the health care delivery system.”
Although nonprofits are effective liaisons between different health care organizations — and they help create progress — Action CF (Cystic Fibrosis) Coalition Chair Lisa Yourman recently told Patient Daily that it is more important to make sure patients stay in the foreground of the discussion. To do this, “There needs to be more focus on the accessibility and affordability of precision medications to patients.”
“Our organization deals with cystic fibrosis, a chronic illness in small children and young adults,” Yourman said. “Precision medications are important and can help extend millions of lives.”
Yourman explained that in the 2015 State of the Union speech, Obama held up CF as a model for a new White House initiative on precision medications, which is a term that refers to “treatments targeted toward a precise defect in the primary cause of a disease.”
Yourman would like to see faster turn-around rates on precision medications, especially those that have been stuck in phase III trials for a year or more.
“I understand that we don’t want to put out medications that have not been tested thoroughly, but in some cases progress is held up and it has nothing to do with the research anymore,” she told Patient Daily. “There has been one medication in development since 1998. Now, in 2016, it is in a second round of phase III trials.”
Yourman believes that the government should help patients gain access to better health care instead of capping drug costs, which is limiting the reach of research funding.
“It is important to tap into the best of American ingenuity, and that starts with the collaboration of private industries, academic institutions, nonprofit organizations and pharmaceutical companies,” Yourman said. “Right now, progress has been slow — and mainly because of politics. Let’s not stop innovation because of government intervention.”
In spite of the bureaucracy, Yourman expects a bright future.
“We have come a long way in the last 20 years,” she said. “We all have every reason to be optimistic that there will be progress.”
The State of the Union Address will be held at 9 p.m. today, Jan. 12.