Wednesday, January 21, 2015

A New Patient-Centric HIV/HCV Co-Infection Resource

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

The ADAP Advocacy Association (aaa+®) has long been concerned about the emerging public health epidemic facing people co-infected with HIV/AIDS and Hepatitis C (HCV). In fact, our organization was among the first to convene a national dialogue to identify some of the programmatic changes, improvements and reforms that could improve access to care for patients living with both HIV-infection and HCV-infection, including leveraging the AIDS Drug Assistance Program (ADAP) to better serve the needs of the consumers/clients. 

People living with HIV infection are disproportionately affected by viral hepatitis; about one- third of HIV-infected people are co-infected with HCV which can cause long-term (chronic) illness and death. HCV progresses faster among people living with HIV infection and people who are infected with both viruses experience greater liver-related health problems than those who do not have HIV infection. Although antiretroviral therapy has extended the life expectancy of people living with HIV infection, liver disease—much of which is related to HCV has become the leading cause of non-AIDS-related deaths among this population.

The Final Report from our HIV/HCV Co-Infection Summit is available online. The Community Access National Network (CANN) was our collaborative partner for the summit, and now CANN is delivering a much-needed patient-centric outcome from it.

On January 15, 2015, CANN announced that it had launched a new flagship program called the “HIV/HCV Co-Infection Watch,” designed to monitor relevant information and trends relating to HIV/HCV co-infection. 

The HIV/HCV Co-Infection Watch will monitor the following items:

AIDS Drug Assistance Programs (ADAPs) covering HCV treatments.
Medicaid programs covering HCV treatments.
Number of total co-infected patients per state.
Number of new co-infected patients per state.
Morbidity statistics per state.
CDC Surveillance.
Public and private insurance barriers to accessing HCV treatments.
Other miscellaneous issues as they arise.

In the most recent blog post of the "Hepatitis: Education, Advocacy & Leadership" (HEAL) coalition, which is a project of the Community Access National Network, the need behind the new resource is explained. Whereas there are resources that currently exist for some of the Co-Infection Watch's objectives, not all, and certainly not all in a centralized location from a patient-centric point-of-view.

Whether it is our very own flagship program, the ADAP.Directory, or the National Alliance of State & Territorial AIDS Director's (NASTAD) National ADAP Monitoring Report, or CANN's existing Medicaid Watch, it is imperative that all stakeholders -- including patients -- have the necessary information, resources and tools needed for effective advocacy.