Tag Archives: patient support groups

E-mail Undeliverable; HCV Patients Left in the Dark

HEAL Blog is the recipient of the ADAP Advocacy Association’s 2015-2016 ADAP Social Media Campaign of the Year Award
By: Marcus J. Hopkins, Blogger

It was a simple task: comb the Internet for a list of Hepatitis C (HCV) support groups in the U.S. with e-mail addresses as a point of contact, compile them into a spreadsheet, and contact each of them to invite them to access and distribute our free monthly HIV/HCV Co-Infection Watch report. Over a period of two weeks, I managed to gather information on 206 support groups with e-mail contact points, and this past week set about contacting each group with our information. Of the 206 e-mails I sent over two days, 63.1% of them were returned as “Undeliverable.” The rejected e-mails came back for a variety of reasons – closed/frozen accounts; full inboxes; hosts that no longer exist – and for each returned e-mail a problem became clearer: we have a support group problem.

E-mail undeliverable message

In collecting the data, I discovered that eleven states (DE, NE, NH, RI, SD, TN, UT, VT, WV, WI, WY) had no HCV support groups with e-mail addresses as points of contact (that I was able to locate). After compiling the data from the returned e-mails, another eleven states (AK, AR, CO, HI, ID, IL, LA, MN, NJ, OR, VA) had no HCV support groups with functioning e-mail addresses. This amounts to a total of twenty-two states without e-mail contacts for HCV support groups.

In all fairness, that doesn’t mean that there are no HCV support groups in those twenty-two states; just that there are no working e-mail addresses listed (that I could find in two weeks) for those states. Every state has at least one support group with a contact phone number, but because those were outside of the parameters of my assignment, they were not included in the data. Given that e-mail is arguably the most-used form of information gathering after searching websites, it creates a significant barrier to HCV patients gaining access to support services.

The paucity of support groups has largely been eliminated for HIV patients. After nearly forty years, many of the support systems are largely in place for patients living with HIV. This is in no small part a result of the tireless efforts of millions of people working to ensure that patients living with HIV have those support networks in place, should they choose or have the desire to use them. Typing “HIV Support Groups” into a Google search bar results in literally thousands of different options for support services; organizations by the hundreds list the various support groups for patients, family members, spouses, children, friends, neighbors, employers, employees…the list of groups is endless. This is not the case for HCV.

Beyond just support groups, lower-income HIV patients also enjoy (for lack of a better word) access to Ryan White programs that were designed to help patients living with HIV to afford the costs of medications, treatments, healthcare, and other costs of living with the disease. HCV patients, however, must rely upon manufacturer- or privately-funded Patient Assistance Programs (PAPs) that are not operated by either state or Federal agencies. Despite both the high cost of HCV medications and the efficacy of the Ryan White program in reducing the number of HIV-related deaths and increasing access and adherence to HIV treatment, there seems little appetite for either creating a similar program for, or opening up the Ryan White program to include HCV patients.

We must do better. In the modern Age of Technology, there is no good reason that HCV patients should have to muddle through incorrect or outdated contact information to access support groups. There is no reason for HCV patients to go without the types of services provided by doctor offices, hospitals, and clinics to HIV patients in accessing these support services. It is unconscionable for us, as one of the most advanced nations on the planet, to continue to fail the HCV community.

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Disclaimer: HEAL Blogs do not necessarily reflect the views of the Community Access National Network (CANN), but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about Hepatitis-related issues and updates. Please note that the content of some of the HEAL Blogs might be graphic due to the nature of the issues being addressed in it.

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