August 6, 2014
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Alan Franciscus

 

Special Alert!

 

Dear Advocators,

We are at a critical moment in advocacy for hepatitis C.  We now have medications that can cure up to 90% of people with hepatitis C.  The new drugs have fewer side effects, and shorter treatment duration than previous drug combinations.  

The previous drug combinations required treatment for up to 48 weeks and had many side effects.  The cost of the last round of drugs was lower, but the drugs had many more side effects that prevented most people from qualifying for treatment and, of course, even more people were afraid to take the medications.

Well, the ‘better’ medications are now available and they are being greatly restricted because of price. 

I hope that everyone with hepatitis C, their loved ones and everyone affected by hepatitis C will read this letter and sign on.  It’s time for us all to step up and make our voices heard and bring everyone to the table.  We need to make these lifesaving medications available to everyone with hepatitis C. 

Please pass along this message. 

Thank you, Alan     

     

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Dear Advocates:

In response to the escalating crisis in access to new, lifesaving hepatitis C medications, a coalition of organizations and medical providers (see list below) has developed the following sign-on statement. Everyone living with hepatitis C who wants to be treated and cured should have access to treatment without barriers. This statement calls on all stakeholders to work together on a solution that ends the current practice of rationing hepatitis C treatment and sends a strong statement that all lives are worth saving.
 
You can sign this statement here.

Individuals, organizations, and medical providers are all encouraged to sign.
 
Your signature indicates permission for it to be used in a variety of advocacy and media activities.
 
Deadline to be listed in first publicly released version of the statement: 5 pm Eastern, Friday, August 15, 2014. Signatures will be accepted after this deadline and the statement will be updated on a weekly basis with new signatures.
 
ALL PEOPLE WITH HEPATITIS C DESERVE LIFESAVING TREATMENT
 
The undersigned organizations, medical providers, and community members are alarmed by the escalating crisis in access to new lifesaving hepatitis C treatments. These drugs have the potential to help us end the hepatitis C epidemic and save thousands of lives. Although the Affordable Care Act recently helped millions of Americans gain access to health coverage, many for the first time, the ACA mandate that no individual be denied insurance based on a pre-existing condition is meaningless if that coverage restricts access to the treatment needed to cure that condition.  Policies that deny access to new, highly effective hepatitis C treatment altogether or limit treatment only to the sickest patients violate laws that now ban discrimination against specific patient populations.  They also undermine our ability to address health inequities and disparities, particularly among communities of color, which are more likely to face barriers to health care access and have disproportionally higher hepatitis C prevalence.
 
The FDA approval of highly promising hepatitis C treatments last year brought tremendous hope, as it marked the beginning of a new era in treating and curing the disease. With high cure rates, significantly reduced side effects compared to previous regimens, and shorter treatment durations compared to previous regimens, these new therapies, along with others in the pipeline, provide an opportunity to end needless suffering and death from extrahepatic conditions, end-stage liver disease, and liver cancer, while reducing and potentially eliminating new infections. Twenty-five years after the discovery of the hepatitis C virus, the tools are now available to eliminate a chronic, infectious, life-threatening disease that, according to data from the Centers for Disease Control and Prevention needlessly hastens the death of 15,000 to as many as 50,000 Americans per year.
 
We are therefore united in our call to all stakeholders, including public and private payers, the pharmaceutical industry, and government to work together to eliminate the barriers that have caused rationing of hepatitis C treatment:
 

  1. Hepatitis C pharmaceutical companies must commit to affordable pricing, broad accessibility, and transparent, good-faith negotiations with payers;

  2. Stakeholders must engage members of the patient, provider, and advocacy community in a process to address access barriers and to minimize consumer cost-sharing obligations;

  3. Payers must ensure that individuals who inject drugs, the group most at risk for new infections, are not systemically excluded from treatment; and

  4. We must send a strong message to all people with hepatitis C:  they deserve to be cured and that everything is being done to end the current rationing of treatment.

 
In addition, no utilization management or prior authorization requirements must be put in place by public or private payers except when it can be demonstrated that such restrictions are developed through a transparent process that:
 

  1. Is in accordance with clinical factors and not just cost effectiveness;

  2. Involves consultation with recognized hepatitis C medical experts; 

  3. Includes meaningful input from the hepatitis C patient and advocate community; and

  4. Requires each payer to maintain an exceptions process for any individual to appeal a denial of access based on their specific individual circumstances.

 
The only way we will stop the treatment access crisis is for all stakeholders to come to the table and develop solutions. The federal government, through its role in implementing the Affordable Care Act and ensuring access to affordable, quality care for all Americans has a responsibility to ensure that these discussions happen quickly, transparently, and with meaningful input from leading hepatitis C medical experts, community leaders, and, most importantly, people with hepatitis C.  
 
Eliminating hepatitis C in the United States would be one of the greatest public health achievements of the 21st century. The question is not can we eliminate the virus, but do all stakeholders have the will to come together and develop real solutions. As a community, we will not rest until hepatitis C is eliminated, and we are committed to working with all stakeholders to achieve this goal. All people living with or at risk for hepatitis C, along with their families, their friends and their loved ones deserve no less.
 
Signatures (as of 8/6/14)
 
Medical Providers:
 
Brian R, Edlin, MD, FACP, FIDSA
Department of Medicine, Weill Cornell Medical Center, New York, NY
 
Robert Gish, MD
Vice Chair
National Viral Hepatitis Roundtable
 
Camilla Graham, MD
Beth Israel Deaconess Medical Center
 
 
Organizations:
 
Caring Ambassadors Program, Inc.
Family Health Centers of San Diego
Global Liver Institute
Harm Reduction Coalition
Hepatitis Education Project
Hepatitis C Mentor & Support Group, Inc.
Hepatitis C Support Project (HCV Advocate)
National Alliance of State and Territorial AIDS Directors
National Viral Hepatitis Roundtable
Project Inform
Treatment Access Expansion Project

 

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Alan Franciscus
Executive Director, Hepatitis C Support Project
Editor-in-Chief, HCV Advocate www.hcvadvocate.org
Editor-in-Chief, HBV Advocate www.hbvadvocate.org

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