by Ryan Clary, Executive director of the National Viral Hepatitis Roundtable
As we enter 2015, nonprofit organizations that specialize in health advocacy start to compile lists of ambitious resolutions for the New Year. They pledge to spread the word more widely than ever about a particular cause, to exert influence over lawmakers, and to enlist more scientists, advocates and donors in the latest public health crusade.
You get the idea.
And I, as executive director of just such a nonprofit, could do the same. I could give you a rundown on our own resolutions to end the infectious disease known as hepatitis C.
Instead, I’m going to be really presumptuous. I’m going to take the liberty of making resolutions on behalf of others. I’ll spell out the vows that I believe all the key stakeholders in the fight against hepatitis C should follow in the year ahead.
Here’s my wish list:
Baby boomers. Know your status. Get tested. Tell your friends. No generation of Americans is at greater risk for hepatitis C than individuals born from 1945 through 1965. In fact, boomers are five times more likely than other Americans to have the disease. Yet awareness of hepatitis C among baby boomers remains dangerously low. All too often, even while serious liver damage is silently occurring, the disease goes long undetected, sometimes for decades.
The pharmaceutical industry. Reduce prices, some of which can run quite high. Work with payers to reduce barriers for those infected to access to life-saving treatments. These drugs have high cure rates, short duration of treatment and minimal side effects compared to previous regimens.
Healthcare professionals. Test your baby boomer patients so those infected can be connected to suitable care.
Congress and the Obama Administration. Increase funding for viral hepatitis now. Flat funding falls short. Develop solutions to eliminate barriers to patient access to treatment.
Federal, state and local health agencies. Keep sounding the alarm to educate baby boomers about the importance of hepatitis C testing. Create, establish and oversee programs that will deliver what federal testing guidelines are intended to accomplish. Request funding to track screenings and perform other vital surveillance. We need to document how many Americans are getting tested and which have chronic infections, whether that number has increased -- and, if so, by how much - as well as specifics about baby boomers. Such data would measure our progress and better inform future advocacy efforts.
Hospitals and health systems. Use your existing electronic medical record systems to issue prompts to healthcare providers to test baby boomer patients and others at risk. Leverage data to inform efforts to plan, develop and implement programs to improve compliance rates.
Insurers. Cover hepatitis C screening for baby boomers and at-risk individuals without a co-payment (most private insurers now do so, but all should). Step up efforts to educate patients about the importance of getting tested. Make all new hepatitis C treatments available -- without barriers -- immediately after FDA approval.
State legislatures. Develop policies to prevent discriminatory practices against hepatitis C patients in need of care. Conduct research to better recognize, understand and ultimately break through the barriers to testing, whether those are purely psychological - such as a dread of diagnosis -- or caused by the healthcare system itself.
Hepatitis C patient advocates. Keep telling your personal stories loud and clear. Nothing is more likely than sharing your personal experience to make a difference in motivating others to get tested.
The news media. Stop obsessing over price, even though the costs of some treatments do run high. Value counts more than cost, especially long-term. Stop drowning out all the promising news about new treatments. Tell stories about how curative treatments improve the lives of people with hepatitis C.
The American public. Learn more about hepatitis C. Eliminate the stigma that discourages some at-risk individuals from even getting tested, much less diagnosed and treated. People with hepatitis C should feel no shame. Prevent individuals who inject drugs, the group most at risk for new infections, from being systematically excluded due to discrimination. Dedicate resources towards better understanding stigma and finding a way to overcome it.
So there you have it: my blueprint for our collective New Year’s resolutions. After all, hepatitis C -- screening for it, adopting public policies for it, finding even better cures for it -- is a community enterprise. To get to the place where we need to go, everyone involved has to row in the same direction at the same time.
Ryan Clary gave permission to reprint this blog which first appeared in the January 8, 2015 HuffPost.