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Hepatitis C: My Latest Reason for Outrage

Despite the fact that since 2007, more people die every year from hepatitis C than HIV, there is no funding for a national chronic hepatitis surveillance system

Despite the fact that since 2007, more people die every year from hepatitis C than HIV, there is no funding for a national surveillance system of chronic viral hepatitis.

I have worked on the front line of hepatitis C patient advocacy for 17 years. I’ve lived with outrage for most of that time. Here are some things that infuriate me:

  1. We have seen the hepatitis C epidemic coming for a long time, and have been slow to act.
  2. The prevalence of new hepatitis C infections is increasing among teenagers and young adults, and we don’t have an effective way to combat this. We don’t have needle/syringe exchange in most of the U.S.; we punish rather than provide help for drug users, and I am still hearing the tired, fictional argument that harm reduction is permissive.
  3. Despite the fact that since 2007, more people die every year from hepatitis C than HIV, there is no funding for a national surveillance system of chronic viral hepatitis.  Between 50% and 75% of those with hepatitis C do not know they have this virus.
  4. I am outraged by the $1000 a pill price tag on the newest hepatitis C drug, Sovaldi. This decision by Gilead has lead to serious ramifications. Because of the cost, at least three state Medicaid programs are restricting access to Sovaldi; more are considering it.
And now, my latest opportunity for outrage:
 5. The Centers for Medicare and Medicaid Service is restricting HIV providers who are not specifically trained as gastroenterologists, hepatologists or infectious disease specialists from prescribing the latest hepatitis C medications to their patients. About 30 percent of the 1.1 million Americans living with HIV are also infected with hepatitis C. HIV is a complicated disease, and many hepatologist and gastroenterologists have limited HIV expertise. The new hepatitis C treatments make it easier than ever to manage this disease, and there is no reason that hepatitis C treatment can’t be prescribed by a broad range of individuals, including well-trained primary care physicians.
Outrage without action is insanity. I don’t walk around drowning in fury; I do something about it.  Here are some suggestions from my Hep blog a couple of weeks ago:
  • Speak up – Join the National Viral Hepatitis Roundtable (NVHR) or an organization that belongs to it.
  • Sign NVHR’s community sign-on letter.
  • Contact elected officials, especially your U.S. Congressional Representative and Senators.
  • Find out what your state is doing, and what groups are working to make a difference.
  • Don’t just get mad – get active. Write opinion letters (op-eds) to your local paper. Let the drug company know that you are angry about the price they set.
  • Donate money to organizations that are fighting to make a difference.
  • Spread the word, especially with social media – we need an ice bucket challenge, preferably something drought-friendly.
A few amazing people have been incredibly active in the fight to gain access to hepatitis C medications for everyone.  A special thank you to VOCAL, Orlando Chavez, and Jules Levin of NATAP. Thank you for keeping me outraged.
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