Tag Archives: Hepatitis

I Just Want Current Data

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

I’m a data person. While I can feign empathy, when it comes to reporting about HIV, Hepatitis B (HBV), and Hepatitis C (HCV), I’m much more of a “numbers” person. So, when Emory University announced, last year, that they were releasing a pair of websites (funded by Gilead Sciences who, in the effort of full disclosure, also fund the Community Access National Network’s HIV/HCV Co-Infection Watch) that would provide advocates, activists, and organizations with tools to help them advocate, I was super excited.

“You can create one-sheets to serve as starting points for state-level and Federal advocacy,” they announced. This is an awesome tool that saves organizations and individuals from having to dig through mounds of data and create their own one-sheets. This tool has so much potential to be a turning point in the way we organize advocacy efforts.

And then, I visited the sites.

The data was (and still is) out of date. AIDSVu was (and still is) using old numbers. The data presented on AIDSVu haven’t changed, and when the sites rolled out in 2017, they were already a year out of date, presenting 2014 data, when 2015 had been available for nearly six months.

The data on HepVu was (and still is) even worse. In 2017, when the site launched, HepVu was using statistics from 2010 – a full four years out of date with the information that was released by the U.S. Centers for Disease Control and Prevention (CDC) in May 2017. Within a month, the data became five years out of date, as the numbers from 2015 were released in summary, and then in detail by June 17th, 2017.

This is a problem.

Any person who works in healthcare advocacy can and will tell you that, unless you have accurate and current data to support your advocacy, you aren’t going to accomplish what you set out to do. The expectation that we are going to sway local, state, and/or Federal legislators with data that are not only woefully out of date, but represent years before there was an explosion of new infections, is a pipe dream.

To use my home state as an example, the data presented by HepVu for West Virginia indicates that in 2010, WV had 21 new Acute HCV infections, with a rate of 1.1 (per 100,000). Had that data been updated in May 2017, they would’ve been using 2015 statistics, in which there were 63 infections, with a rate of 3.4 – literally triple the amount of new infections, and more than triple the rate. Were they using the most recent statistics from the state, they would be showing that, in 2016, there were 132 new HCV infection, with a rate of 7.2 – more than double the year prior.

West Virginia - In 2014, 120 of every 100,000 people were living with diagnosed HIV.

Photo Source: AIDSVu

West Virginia - In 2010, an estimated 24,000 people were living with Hepatitis C.

Photo Source: HepVu

It is easy to understand why the 2016 numbers, which are the most current available, will be more effective in any advocacy efforts.

But, the problem doesn’t just begin and end with AIDSVu/HepVu. As I’ve been gathering state-level data for an upcoming presentation, virtually every state in the U.S. has woefully outdated information available on their respective epidemiology (or equivalent) websites:

Kentucky – the state with the third-highest rate of HCV in the nation (2.7 in 2015) – hasn’t updated its Hepatitis C Department for Public Health website since February 24, 2016, and is still inviting people to attend the 2016 Kentucky Conference on Viral Hepatitis on July 26th, 2016.

Colorado – the state’s quarterly HIV surveillance reports just stop after the 2nd Quarter 2017.

Georgia doesn’t even seem to have published reports on disease statistics, and requesting that data (which, by the way, is supposed to be public data) requires a minimum fee of $25.

Hawaii – the state department of health hasn’t put out an annual report since 2012.

The point is this: there will always be data lag – the time between the end of the year when a state’s data is gathered and the time when it’s verified and published. For most diseases, that seems to be about a two-year lag. But, if we ever intend to become better advocates, we need to rethink how data is gathered and presented in a timely manner.

I get it – not every state has the resources to track every disease, publish a report, and update their website (hell – Alaska’s Medicaid program hasn’t updated its Preferred Drug List since literally March 2015; I even E-mailed to ask, and was told that that date is correct…). But, we are getting to the point where, in 2018, these types of data need to be made readily available quickly and accurately. We literally have the technology; we can do it.

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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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Class Action Correctional Malpractice

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

Inmates in Oklahoma prisons must have advanced liver disease before they become eligible for treatment for Hepatitis C (HCV). This means that their livers must manifest significant scarring before they’re even allowed to receive the curative treatment that will prevent further damage (Botkin, 2018).

A class action lawsuit has been filed in the state of California alleging that doctors within the prison system have denied them treatment because their liver disease isn’t advanced enough, that their disease is too advanced, and/or the drugs are too expensive (Locke, 2018).

A class action lawsuit in Missouri alleges that only five out of thousands of Missouri inmates have received treatment for HCV, desite between 10-15% of the incarcerated population being infected with HCV (Margolies & Smith, 2017).

Idaho says that nearly 1/3 of its prisoners have HCV, and it needs $3M to treat them (Boone, 2018). An inmate diagnosed with HCV while in a Mississippi prison has filed a suit alleging they’ve refused him treatment on at least nine separate occasions (Wolfe, 2018).

Inmate looking out window with bars on it

Photo Source: thedenverchannel.com

Each of these instances is indicative of a few major points: (1.) We have a growing number of prisoners within our justice system who are infected with HCV; (2.) Prison systems and/or state Departments of Corrections (DOCs) are refusing or delaying treatment; (3.) This is unconstitutional.

In last week’s HEAL Blog (“Cruel and Unusual” Neglect in Prisons), we introduced the concept of “deliberate indifference,” a measure introduced by Estelle v. Gamble (1976). This week, there’s another take – does being literally unable to afford the cost of treating inmates qualify as deliberate indifference?

The answer to that question really depends on the judge who hears the case. In 2017, U.S. District Court Judge Mark Walker in Tallahassee, Florida ruled in favor of three inmates who filed a class action lawsuit against the state of Florida, requiring the state to treat a significant portion of its 98,000 inmates (total population; not HCV-infected population) for HCV (Klas, 2017). Similarly, in Pennsylvania, a U.S. District Court Judge Robert D. Mariani ruled in favor of Mumia Abu-Jamal, an inmate who gained notoriety for his shooting of an officer who had stopped his younger brother in a traffic stop (Mayberry, 2017). Both Federal judges found that prisons are required to provide treatment for HCV, regardless of the cost.

Make no mistake, however – these rulings are few and far between; the primary issue is that it’s difficult to prove “deliberate indifference” without detailed and voluminous documentation. Even then, the measure is specifically designed to be difficult to prove (as are all burdens of proof). And the primary reason why prisons refuse or delay treatment has little to do with indifference, so much as the cost. HCV Direct-Acting Antivirals are prohibitively expensive for regular consumers; prisons, however, have even less wiggle room, as they are largely unable to negotiate on drug prices.

Where we are, at the moment, seems to be a holding point: until the drugs to treat HCV get exponentially cheaper to purchase (right now, the least expensive 8-week treatment regimen – Mavyret (AbbVie) – goes for $26,400, roughly 1/3 the cost of the cheapest drug in 2013), prison systems are unlikely to make any substantive efforts to treat HCV-infected inmate. Moreover, until the Federal government requires states to both screen and treat inmates for infectious diseases, it’s likely that HCV will continue to spread among inmates and the general population.

References:

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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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2017 Year in Review

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

As it tradition for HEAL Blog, the final post for 2017 will be a look back at the topics we’ve covered over the year and a look forward to the future.

2017 Year End, Turning into 2018

Photo Source: AGH University

HEAL Blog releases 50 posts a year (including this post), and those posts fell within one of five categories: Hepatitis Increases, Incarceration, HCV Drug Discussions, Opioids, and Other. Posts related to Hepatitis Increases focused primarily on reports of increased infection/morbidity rates in various states and population, including Hepatitis A, B, and C. Those related to Incarceration focused primarily on increased infection rates and treatment within incarceration settings (prisons, jail, and juvenile detention centers). Posts related to HCV Drug Discussions focused on pricing, availability, and treatment outcomes. Opioid-related posts focused on the toll of the opioid epidemic in the U.S. and the role they play in increasing rates of infection for HIV and Viral Hepatitis (VH). Posts that fell outside of those specific topics are categorized as “Other.” The distribution of those posts are as follows.

  • Hepatitis Increases – 17
  • Incarceration – 4
  • HCV Drug Discussions – 15
  • Opioids – 9
  • Other – 4

As the incidence of Viral Hepatitis infections continues to rise, there are specific patterns – most of the highest rates exists in states that are primarily rural or suburban (with few densely populated metropolitan areas); new Acute Hepatitis C (HCV) diagnoses tend to be in younger populations (ages 18-45) and are increasingly linked to Injection Drug Use (IDU) as the primary risk factor for infection within this age demographic. Prescription opioid abuse and heroin are playing an increasing role in the spread of HCV, not only in America, but across the globe. In the U.S., many of the rural states where HCV rates are exploding are racially and ethnically homogenous (read: primarily Caucasian/White). Despite this, even in states with low numbers of racial and ethnic minorities, African-Americans are disproportionately impacted by HCV infections as a percentage of the population – despite being fewer in number, the percentage of African-Americans infected is higher than other racial and ethnic groups.

In addition to HCV-related infection increases, homeless and indigent populations are facing vast increases in Hepatitis A (HAV) infections, particularly in metropolitan areas where homeless encampments are more densely packed and infections are more easily spread. Arizona, California, and Minnesota have all experienced high rates of HAV within their respective homeless populations, with California facing the highest rates of both morbidity and mortality. California’s HAV crisis is also quickly spreading along the coastline, heading northward. HEAL Blog will continue to monitor the situation.

As for the forecast into 2018…it’s not looking good for the U.S. With the installation of the Trump Administration’s various secretaries and their approach to management and governance, both healthcare advocates and institutional healthcare presences are considerably concerned with the path being laid before us. In addition to concerns about the appointments being made by the Trump Administration (of which there are many concerns, and far fewer appointments), the Legislative Branch’s stewardship under Republican majority in both houses has proven both hostile to the healthcare concerns of Americans, and incredibly clumsy in their attempts to address virtually any issue put before them. Both the Executive and Legislative Branches have inspired little confidence that anyone – healthy or otherwise – are going to come away from their agendas unscathed.

Both branches have, in 2017, created an environment of legislative and administrational chaos and uncertainty, both of which are reflected in the higher increases in health insurance premiums offers on the Affordable Care Act’s (ACA) insurance marketplaces. Between shortened enrollment periods and all-but-eliminated advertising and outreach budgets, enrollment is expected to fall short of its goals for insuring Americans in 2018. Moreover, this type of chaos, unreliability, and unpredictability tend to breed contempt, which may result in Republicans losing their majority in one or both houses during the 2018 midterm elections.

Of significant concern is the Republican Senate’s approach to bill crafting, which has largely been conducted in secret, without input from Democratic lawmakers, and is heavily influenced by the very special interest groups against which many of these politicians campaigned. After failing twice to repeal the ACA in 2017 despite having a majority in both houses, Senate Republicans have repeatedly attempted to cripple the law through various means, the most recent of which involved slipping into their “Tax Reform” bill an effort to repeal the individual mandate provision that requires virtually every American to purchase some sort of qualifying health insurance plan in an effort to stabilize costs once sicker clients entered the market.

In the Administrative Branch, the heads of the various Departments nominated by President Trump have done little to inspire confidence, as well. Tom Price, who was Trump’s initial pick for the Department of Health and Human Services, was forced to resign after reports indicated that he racked up $400,000 in privately chartered flights for personal and professional reasons. This was a significant departure, as previous heads took commercial flights, save for rare exceptions. Now that Price is out of the way, Trump has nominated Alex Azar, a former pharmaceutical company executive whose tenure at Eli Lilly saw a three-fold increase in the cost of the insulin over a ten-year period. Needless to say, it is less than certain that a person who oversaw such price increases will be the “…star for better healthcare and lower drug prices,” as President Trump stated in his tweet announcing his pick for the position.

Given the chaotic and unsteady stewardship of the country, it is hard to express any optimism going forward unless circumstances change dramatically.

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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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Hepatitis A Outbreak Expands Throughout Southern California

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

In mid-September 2017, HEAL Blog wrote about the extreme measures taken by San Diego County and city to combat a severe outbreak of Hepatitis A (HAV) among the county’s homeless, indigent, and illicit drug user populations (Hopkins, 2017). At that time, the HAV outbreak consisted of 421 confirmed cases, 292 hospitalizations, and 16 deaths. That initial outbreak, which began in November 2016, has continued to grow with 481 confirmed cases, 337 hospitalizations, and 17 deaths (Sisson, 2017). The outbreak is also spreading.

Both Santa Cruz and Los Angeles Counties have begun seeing outbreaks of HAV related to the initial outbreak in San Diego County, with 68 confirmed cases in Santa Cruz County (Health Services Agency, 2017) and 12 confirmed cases in Los Angeles County, 9 of which required hospitalization (Acute Communicable Disease Control, 2017). These cases do not include all of the reported HAV cases; only those connected to the San Diego outbreak. These cases are primary among the same populations in these counties as they were in San Diego County – homeless, indigent, and illicit drug users.

Hepatitis A Facts

Photo Source: MedChitChat.com

According to Kaiser Health News writer, Stephanie O’Neill, poor access to restrooms and sinks in homeless encampments is largely to blame for these outbreaks (O’Neill, 2017). San Diego County responded to their outbreak by installing 40 portable hand-washing stations throughout the downtown areas hardest hit by the outbreak, leaving public restrooms open overnight, and power-washing heavily soiled sections of downtown sidewalks and streets with a bleach solution in an effort to stop the spread of the virus (O’Neill).

Southern California’s HAV outbreak is being described as “unprecedented” and “the largest outbreak in the U.S. that is not related to a contaminated food product” since the U.S. first introduced a vaccine for hepatitis A in 1995 (O’Neill). This trend is unlikely to be restricted to Southern California. According to the National Law Center on Homelessness and Poverty (NLCHP), “Despite a lack of affordable housing and shelter space, many cities have chosen to criminally or civilly punish people living on the street for doing what any human being must do to survive” (NLCHP, n.d.). Additionally, the NLCHP notes that, since 2006, bans on camping city-wide have increased by 69%, bans on sleeping in public have increased by 31%, bans on sitting or lying down in public have increased 52%, bans on loitering, loafing, and vagrancy have increased 88%, and bans on living in vehicles have increased 143% (NLCHP). Furthermore, most cities in the U.S. close public restrooms at dusk, leaving homeless people with nowhere to relieve themselves.

While the intention of these bans is to move cities’ homeless populations out of the line of sight and create “safer” public spaces for homed populations, the real-life effect has resulted in creating conditions ripe for the spread of diseases like HAV. People who lack access to restroom and handwashing facilities are forced to relieve themselves in the open, creating biohazardous waste and fostering the spread of HAV to potentially anyone who comes in contact with their refuse.

It is also likely that, as more cities are hit with HAV outbreaks related to homelessness and illicit drug use, responses will vary between highly effective public health responses like those put in place by San Diego County, and highly ineffective criminalization responses that end up creating worse circumstances than they purport to fix.

References:

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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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2nd Annual HIV/HCV Monitoring Report Released

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

On September 21st, 2017, the Community Access National Network (CANN) hosted the 2nd Annual National Monitoring Report on HIV/HCV Co-Infection at the Pharmaceutical Research and Manufacturers of America (PhRMA) headquarters in Washington, D.C. Presentations were delivered by yours truly, and Amanda Bowes, Manager on the Health Care Access team for the National Alliance of State and Territorial AIDS Directors (NASTAD), both of whom focused on issues of coverage for Hepatitis C (HCV) Direct Acting Antivirals (DAAs) for the 59 AIDS Drug Assistance Programs (ADAPs) and Medicaid programs, as well as information about the U.S. Department of Veteran Affairs (V.A.) and Harm Reduction measures.

HIV/HCV Co-Infection Watch

HIV/HCV Co-Infection Watch

Key findings of my presentation indicate that, as of August 2017, 33 state ADAP programs offer coverage for DAAs on their ADAP formularies, an increase of six states from August 2016. Additionally, all 50 states and the District of Columbia have offered expanded coverage for DAA drugs since August 2016. In March 2016, the V.A. began offering treatment with DAAs to every eligible veteran. In terms of Harm Reduction, several states have authorized Syringe Services Programs (SSPs) in an effort to prevent the spread of HIV, Hepatitis B (HBV), and HCV since Congress ended the ban on Federal funding for Syringe Exchange Programs in January 2016.

One other key finding was that, in seven of the states with the ten highest rates of HCV infection, ADAP programs offer either no coverage for HCV drugs or offer coverage only for older, less easily tolerated treatments requiring the use of Pegylated-Interferon (PEG-INF). These states include (in order of highest HCV infection rates): WV, KY, IN, NM, AL, NC, and OH.

Key findings of Mrs. Bowes’ detailed presentation indicate that NASTAD has actively been attempting to increase HCV DAA coverage by ADAP programs in cooperation with the Health Resources and Services Administration (HRSA) while still maintaining fiscal solvency. This consultation, in June 2016, included ADAP and Viral Hepatitis (VH) program staff, Federal partners including the Centers for Medicare and Medicaid Services (CMS), U.S. Department of Health and Human Services (HHS), HRSA, and the U.S. Department of Veteran Affairs (V.A.), providers specializing in treatment for HIV/HCV co-infection, community partners, and NASTAD staff. The meeting was comprised of a panel of Federal representatives, a presentation on the best practices for ADAP HCV treatment utilization, and a discussion of the various barriers preventing ADAP programs from expanding coverage, clinical management of HIV/HCV co-infection, and policies and procedures for HCV treatment among People Living With HIV (PLWH).

Additionally, NASTAD gathering detailed information related to how ADAP programs covered the cost of HCV DAAs, finding that programs that offered Insurance Continuation (purchasing private insurance coverage for ADAP clients) and paid for the co-pays, rather than paying the full prescription cost, were able to save considerably over paying directly for the medications.

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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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Hepatitis A: Extreme Sanitation Measures in San Diego

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

As a blog designed to talk about issues related to Viral Hepatitis and HIV, we do our best to stay focused on the topic of Hepatitis C (HCV). Recent developments in San Diego, CA, however, have captured our attention and merit coverage and discussion.

Since early 2017, the Public Health Services Division (PHSD) in the San Diego Health and Human Services Agency (HHSA) has been investigating a significant outbreak of the Hepatitis A (HAV) virus. As of September 12, 2017, there have been 421 confirmed cases of Acute HAV which have resulted in 292 hospitalizations (69%) and 16 deaths (3.8%). The majority of these cases have been within San Diego’s homeless and/or illicit drug user populations, although some cases have been neither (HHSA, 2017).

Hepatitis A Outbreak Spreads Beyond Homeless in San Diego

Photo Source: San Diego Informer

HAV is spread primarily by ingesting the virus by way of contact with objects, food, or drinks contaminated by feces or stool from an infected person, and the symptoms may include fever, fatigue, loss of appetite, nausea, vomiting, abdominal pain, dark urine, clay-colored bowel movements, joint pain, and/or jaundice (yellowing of the skin or eyes). Moreover, HAV is very hardy and is able to live outside the human body for months, making it particularly easy to spread (CDC, 2016).

In response to this outbreak, San Diego has taken the unusually proactive step of implementing extreme health measures in order to combat the spread of HAV including the installation of 40 handwashing stations in areas with high concentrations of homeless people, sanitization efforts in those areas, holding 256 mass vaccination events and 109 “foot teams” of public health nurses who go into the aforementioned areas to offer vaccinations, distributing over 2,400 hygiene kits that include water, non-alcohol hand sanitizer, cleaning wipes, clinic location information, and plastic bags, and implementing street cleaning protocols that require sanitation department workers to power-wash streets and buildings with chlorine and bleach (Bever, 2017).

While these measures may seem extreme, the reality of combating an HAV outbreak once it’s already taken hold means that extraordinary steps must be taken. Despite the availability of HAV vaccinations since 1995, much of the homeless and indigent population either lack access to those healthcare resources, or are too old to have been vaccinated as children. During the mass vaccination events, county health officials have vaccinated 19,000 people, including 7,300 considered to be at-risk of contracting the disease (Warth, 2017). Additionally, the city has agreed to extend public toilet hours to 24/7 in order to allow homeless people access to the restrooms, rather than defecate in the open, whether others may come in contact (Montes, 2017).

While these proactive measures will certainly help to combat the spread, the most important step will be reaching, vaccinating, and educating hard-to-reach/hard-to-treat homeless, indigent, and/or illicit drug user populations in an effort to effect behavioral changes in order to prevent further spread of the disease. This means teaching proper handwashing techniques, proper hygiene, and proper sterilization of equipment used to partake in illicit drug use. San Diego, despite the dire circumstances it currently endures, is taking the right steps to ensure safer streets for their homeless population.

References:

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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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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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