Tag Archives: Viral Hepatitis

Emory University and CDC Reveal HepVu

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

The latest tool in Viral Hepatitis advocacy has arrived: HepVu (www.hepvu.org). A project of Emory University’s Coalition for Applied Modeling for Prevention (CAMP) – supported by the Centers for Disease Control and Prevention (CDC) – HepVu is an interactive website that provides various data related to Viral Hepatitis (VH), with the greatest emphasis being placed upon Hepatitis C (HCV), the least accurately reported variant in the U.S.

The website features interactive maps detailing estimated prevalence data, rates of infection, mortality data, and regional impacts and comparisons on both the national and state levels. While HCV data released by the annual National Health and Nutrition Examination Survey (NHANES) conducted by the CDC produces national estimates, HepVu is the first analysis that uses a more nuanced formula that includes NHANES data, but also examines state-level reporting and statistics that includes electronic medical records (EMRs), insurance claims, and HCV-related mortality.

Other site features include infographics, explanations about the various types of VH, and the ability to print and download maps and data for use in advocacy efforts and reports. Dr. Patrick Sullivan, one of the researchers associated with creating the project, stated that making the site a resource for HCV-related advocacy and reporting efforts was an essential step in creating HepVu. This is the first HCV-related website (of which I am aware) that makes these data easily available for reprinting and citation purposes.

The contributing researchers to the website admit that this reporting is likely well below the actual prevalence and rates of infection, because screening, reporting, and tracking vary in quality and amount of data from state to state, in no small part because of a lack of Federal and state funding for HCV reporting, as well as adequate and standardized reporting requirements set by the CDC. Part of what makes this data so important is that it serves as a great starting point for advocating for increased funding for reporting and tracking – something that Congress has been slow to address, despite large increases in funding to address America’s opioid and heroin abuse crisis, the leading contributor to the rise in new HCV infections.

The primary limitation of the data presented on HepVu (and in general) is age: the vast majority of the data centers on 2010 and 2014 – seven and three years old, respectively. This complaint has been a sticking point for advocates and HCV-related organizations for several years, particularly because of the release of easily tolerated and highly effective Direct Acting Agents (DAAs) that serve as a curative treatment for HCV. Now that we have these tools to eradicate HCV, it is imperative that we begin operating on current information, rather than relying upon data that predates two presidential elections. This means that both Federal and state governments are going to have to step up to the plate and begin adequately funding screening, reporting, and tracking efforts, regardless of the high cost of these drugs.

HepVu is an excellent starting point, despite the data limitations, and so long as the statistics and information are regularly updated with more current information, it has the potential to become an invaluable tool in combating HCV and hopefully eradicating the virus from the U.S., entirely.

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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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Heroin and Hepatitis Go Hand in Hand

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

Over the past year, HEAL Blog has paid a lot of attention to heroin, particularly in relation to the massive increase in heroin and prescription opioid overdoses in Appalachia, the Midwest, and the Northeast. While the purpose of HEAL – “HEAL” standing for “Hepatitis: Education, Advocacy, and Leadership” – is to specifically address issues related to Viral Hepatitis, and particularly Hepatitis C (HCV), when we cover issues related to prescription opioid abuse and heroin, we sometimes fail to connect the dots between the two topics. There is, in fact, a very high correlation between Injection Drug Use (IDU), People Who Inject Drugs (PWIDs), and the transmission of HCV: most new HCV infections in the three previously listed regions are related to IDU.

Sources of Infection for Persons with Hepatitis C

Photo Source: Pinterest

HCV and HCV-related co-morbidities (e.g. – Cirrhosis, Advanced Liver Disease) kill more Americans each year than any other infectious disease (Centers for Disease Control and Prevention, 2016). It is also one of the most expensive diseases to treat, with Direct Acting Agent (DAA) drug Wholesale Acquisition Costs (WACs) ranging between $50,000 and $100,000 for twelve weeks of treatment. This makes preventing the spread of HCV not only a matter of physical health, but one of fiscal health.

Despite pharmaceutical manufacturers’ arguments that the one-time cost of a regimen to achieve a Sustained Virologic Response (SVR – “cure”) is far cheaper than the long-term costs of other diseases, not to mention the long-term costs that arise if HCV goes untreated, state and Federal healthcare budget departments remain unconvinced. Budgeting processes generally focus on a single year, rather than accounting for multi-year spending, so arguing that long-term expenditures “cost” more hasn’t been an effective argument. Even with the clandestine pricing agreements and rebates – clandestine, because they are not made public due to “trade secrets” laws – states have yet to begin treating every HCV-infected client on their government-funded rosters. To do so would blow through entire pharmacy budgets several times over, in many states.

With PWIDs representing the highest number of new HCV infections between the ages of 18-35, state legislatures are starting to come around to the realization that the best way to avoid spending that money on expensive treatments is to put into place Harm Reduction measures that are shown to prevent the spread of blood borne illnesses. As it is very difficult and unfeasible to stop IDU, syringe exchanges can be put into place that allow PWIDs to inject using clean needles, rather than sharing them.

Syringe exchanges have, for much of the past forty years, been largely reviled by politically conservative politicians and states; many Republican politicians have repeatedly argued that state-sponsored syringe exchanges will only encourage bad behavior, serving as a tacit endorsement of IDU. Now that prescription opioid and heroin abuse has moved outside of the urban areas and into the suburban and rural areas that serve as bastions of the Conservative ideal, suddenly, these politicians are coming around to the idea.

Medical technician counting needles.

Photo Source: Daily Beast

In the past two years, several considerably conservative states have passed laws allowing syringe exchanges to be established – Indiana, North Carolina, Ohio, and Virginia, to name a few – largely in response to a relative explosion of new HIV and HCV infections related to IDU. The problems that politicians and their constituents once relegated to the big cities have come to their quiet towns, and have done so right under their noses. The lessons out of Scott County, Indiana, where nearly 200 people tested positive for HIV near the end of 2015 and into 2016, are still reverberating throughout the region, and people are starting to look at ways to prevent the spread of disease, rather than punish the behavior.

It is clear that the opioid and heroin abuse epidemic is not going away, anytime soon. Since we aren’t likely to stop currently addicted people from injecting drugs, the smartest path forward is to at least make certain they can do so safely.

References:

  • Centers for Disease Control and Prevention (CDC). (2016, May 04). Hepatitis C Kills More Americans than Any Other Infectious Disease. Atlanta, GA: Centers for Disease Control and Prevention: Newsroom Home: Press Materials: CDC Newsroom Releases. Retrieved from: https://www.cdc.gov/media/releases/2016/p0504-hepc-mortality.html

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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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2016 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

In the last post of 2016, we at HEAL Blog will take a look at the stories that presented the greatest issues of the year. While there are still new stories to cover, December presents an interesting challenge, as much of the news and events get swallowed up in the year-end hustle and bustle, as well as the excitement of the various holidays. As such, it serves as an excellent opportunity for reflection upon the year we leave behind, as well as aspirations we may have for the year to come.

In 2016, three main issues have garnered repeated coverage: nominal coverage versus actual access, the financial burden posed by newer Direct Acting Agents (DDAs) to treat Hepatitis C (HCV), and opioid and heroin abuse and overdose. The latter topic was featured or mentioned in no fewer than nineteen post, over the course of 2016, and if mortality and emergent care reports are indicative of any trend, that number is likely to increase in the coming year.

Perhaps the biggest frustration faced by patients is the lack of access to effective, easily tolerated HCV treatments. While most Medicaid, Medicare, AIDS Drug Assistance Programs (ADAPs), and private insurance plans indicate on their formularies and Preferred Drug Lists (PDLs) that they offer coverage for newer DAA HCV drugs, actually gaining access to these drugs is often an exercise in patience, abstinence, and enraging hurdle jumping that leaves many patients in the lurch. Whether it’s waiting for one’s liver to degrade to the right fibrosis score, abstaining from drug and/or alcohol use for a predetermined period, or simply fighting through the various appeals and denials, most patients, regardless of their payer, face an uphill battle to being approved for treatment. Many of these trends were also covered throughout the year in the HIV/HCV Co-Infection Watch.

This type of nominal coverage – indicating that coverage is offered, but approving relative few prescriptions – is largely related to the second major issue of 2016: financial burden. Treating and curing HCV is expensive, though few payers have the flexibility to openly disclose exactly how expensive due to existing trade secrets laws that prevent them from publicly revealing the exact price they pay per drug. Regardless of the various discounts and rebates offered by drug manufacturers, every player has indicated that the price is still too high to remove the draconian Prior Authorization (PA) standards they’ve put in place to open coverage to everyone, regardless of liver degradation or whichever other bullet point they’ve managed to fail. Regardless of how many reports, studies, and analyses are put forth indicating that the short-term high cost of a cure is far less expensive than the longer-term repercussions and various related ailments and costs associated with untreated Chronic HCV, there is little indication from payers that these roadblocks to care will be removed.

Perhaps the most personally onerous barrier amongst these myriad prerequisites is the abstinence measure. With an estimated 60% of new HCV infection being related to Injection Drug Use (IDU), People Who Inject Drugs (PWIDs) are often the most stigmatized and marginalized patients infected with HCV. In fact, the stigma related to IDU HCV infection has been listed as one of the primary social barriers to screening for HCV; the threat of being perceived as a drug abuser by friends, relatives, healthcare professionals, and society at large leaves many people hesitant to be screened for HCV, and that fear is exacerbated by the growing number of opioid-related arrests, overdoses, and deaths reported in the media.

Opioid and heroin abuse and overdoses were, again, mentioned in at least nineteen HEAL Blog entries, underscoring the immensity of the threat that’s facing rural and suburban America. While emergent care and law enforcement agencies are attempting various approaches to making headway in dealing with these issues, many state legislative and executive branches are instead taking a hard line on the issue, relying on outdated and troublesome research, as well as outmoded prejudices and preconceived notions about who is to blame, who is at fault, and how hard to come down upon them.

It doesn’t help that, despite solid research and scientific evidence, current public opinion about how to deal with the crisis has seen a troubling resurgence of blunt force solutions, over nuanced, evidence-based approaches. The prevailing sentiment seen in many of the rural and suburban areas is, “It’s their problem, and if they can’t deal with it, it’s still their problem.” While this line of thinking may provide feelings of moral superiority and indignity, they do not help craft real world solutions, especially when those sentiments become campaign talking points.

2017 pushing 2016 down

Photo Source: Fotolia by Adobe

Overall, 2016 has been something of a rough year, with less than glowing reports coming from virtually every sector of the HCV advocacy arena. And, if we’re being honest, we face uncertain times in 2017, with many of us watching and waiting for signs that we’re moving in either direction. This is the most frustrating part for virtually all parties involved: we just don’t know what’s next, nor do we know how or for what to prepare. And with that, we bid 2016 adieu.
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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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The 2016 Election, and What This May Mean for Healthcare

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

The passage of the Affordable Care Act (ACA), also known as Obamacare, included a provision that gave states the option to expand Medicaid coverage in order to cover citizens whose incomes were above the Federal Poverty Level (FPL), but whose incomes still present a significant barrier to purchasing health insurance. Of the 50 United States and the District of Columbia, 32 states (including DC) have opted to expand their Medicaid programs. Nineteen states have opted not to expand access.

Expanding access to Medicaid is an essential piece of the ACA, as it was designed to help increase the number of people with access to affordable healthcare. Because the ACA envisioned low-income people receiving coverage through Medicaid, it does not provide financial assistance to people below poverty for other coverage options. As a result, in states that do not expand Medicaid, many adults fall into a ”coverage gap” of having incomes above Medicaid eligibility limits, but below the lower limit for Marketplace premium tax credits (Garfield & Damico, 2016). Since the expansion of Medicaid under the ACA, 73,137,154 Americans were enrolled in Medicaid/CHIP as of August 2016 (Henry J. Kaiser Family Foundation, 2016).

There are an estimated 2.6 million Americans who currently fall into that coverage gap, and of the states that did not expand Medicaid, four states represent 64% of those people (TX – 26%, FL – 18%, GA – 12%, NC – 8%). When looking at the geographic distribution of those 2.6 million Americans, 91% are in the American South (Garfield & Damico, 2016). Demographically, 46% are White non-Hispanics, 18% are Hispanic, and 31% are Black, and over half are middle-aged (age 35-54) or near elderly (55 to 64). Additionally, the majority of people in the coverage gap are in poor working families.

Donald J. Trump

Photo Source: NBC News

President-elect, Donald J. Trump, as well as the incoming Republican-led Congress and Senate, have openly stated that their first priority, at the beginning of the next legislative session, is the repeal of the ACA. There are very few comprehensive plans being proffered to replace the ACA, and healthcare professionals, providers, payers, patients, and advocates, alike, are currently unsure about the future of the expansion, and whether or not that aspect of the ACA will be retained in the forthcoming repeal.

It bodes poorly for those existing people infected with viral hepatitis, especially Hepatitis C (HCV), who stand to lose coverage if the Medicaid expansion does not survive the repeal, even with the existence of drug manufacturer and private Patient Assistance Programs (PAPs). In order for those PAPs to be accessed, however, people must first know about them; without the aid of social workers, healthcare aides, and advocates, people living with HCV are unlikely to find out about these PAPs, unless this information is provided to them by a doctor or nurse.

An additional concern exists for those recipients of the Ryan White Program. Over the past eight years, HIV/AIDS advocates and policy wonks have been in a near-constant debate about whether to reopen the Ryan White Care Act for reauthorization to address some of the ways in which the current law has not necessarily aged well, in terms of keeping up with newer treatments, costs, and funding paradigms. The concern over the past five years has been that the Republican-controlled Congress would “gut” the bill, cutting out many of the provisions upon which organizations and patients have come to rely. With repealing the ACA having played such a large role in this year’s election, concerns about reopening the act are likely to deepen, rather than abate. It is important to note that many states include HCV therapies under their AIDS Drug Assistance Program’s drug formularies.

The HEAL Blog  will pay close attention to both programs, as well as other HIV and HCV-related issues throughout 2017.

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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Intersection of Imprisonment and Healthcare

By: Marcus J. Hopkins, Blogger

“Nearly forty years ago, the U.S. Supreme Court ruled in Estelle v. Gamble that ignoring a prisoner’s serious medical needs can amount to cruel and unusual punishment, noting that “[a]n inmate must rely on prison authorities to treat his medical needs; if the authorities fail to do so, those needs will not be met. In the worst cases, such a failure may actually produce physical torture or a lingering death[.] … In less serious cases, denial of medical care may result in pain and suffering which no one suggests would serve any penological purpose” (American Civil Liberties Union, n.d.)

 

These words put forth in a Supreme Court ruling are vitally important in today’s society – one in which the Centers for Disease Control and Prevention (CDC) released its first ever National Survey of Prison Health Care, the results of which were rosy on the surface, but admittedly (on their part) limited in scope, because they only asked if the service was available, rather than checked to see if the services were actually delivered. In addition, numerous reports at the 2016 International AIDS Conference in Durban, South Africa point to a serious issue brewing in the world’s prisons, as the “War on Drugs,” mass incarceration of drug users, and the failure to provide proven harm reduction and treatment strategies has led to high levels of HIV, tuberculosis, and hepatitis B and C infection among prisoners—far higher than in the general population (Medical Express, 2016).

Two hands holding prison bars

Photo Source: News Limited

The U.S. is exceptional, when it comes to the number of inmates in prison for drug offenses: of the 182,924 inmates currently in Federal prison, 84,746 (46.3%) of them were there for drug-related offenses (Federal Bureau of Prisons, 2016). There are roughly 5 million drug-related arrests each year (Prison Policy Initiative, 2016), all of whom spend some portion of their time going in and out of the jail or prison population, which increases the risk of exposure to blood borne pathogens such a HIV, Hepatitis C (HCV), Hepatitis B (HBV), and Tuberculosis (TB) exponentially over that of the general population. As Injection Drug Users (IDUs) represent an ever-increasing percentage of new HCV infections in the U.S. and around the world, the risk of transmission amongst prison populations is an incredibly serious issue that needs to not only be watched, but addressed.

The unfortunate intersection of imprisonment and healthcare statistics is the reality of the HCV treatment landscape in our nation’s prisons. This has been brought into sharp focus, recently, by a Federal lawsuit against state prison officials in Tennessee, which asks the courts to force the state to start treating all inmates who have HCV (WBIR, 2016).. The Tennessean (part of USA Today) released a report in May 2016 finding that only 8 of the 3,487 inmates known to have HCV were being treated for the disease (Tennessean, 2016) – treatment to which these patients are constitutionally guaranteed, but for which few are ever approved. Further complicating the issue is that the number of HCV-infected inmates is likely much higher, but only a handful are ever tested, because “…acknowledging inmates have the disease means they must treat it.”

The lawsuit in Tennessee is just the latest in a string of Federal and class action lawsuits filed against state and Federal prisons over access to HCV drugs, which similar suits being filed in Pennsylvania, Massachusetts, and other states. Failure to adequately screen and treat all incoming patients for infectious diseases such as HIV and HCV is, in this writer’s opinion, a gross dereliction of duty on the part of prison officials that risks not only prison populations, but to all citizens at large, once those prisoners are released into general population. HIV and HCV that goes untreated is not only likelier to result to much more costly long-term health complications (and potentially death), but is also likely to result in greater overall infection rates, as untreated diseases are more easily spread from person to person.
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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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Behind the Scenes at Hepatitis, Inc.

By: Marcus J. Hopkins, Blogger

The Hepatitis Appropriations Partnership (HAP) and the National Viral Hepatitis Roundtable (NVHR) hosted a panel discussion on Wednesday, July 29th, 2015, in Washington, D.C. to discuss the burgeoning Viral Hepatitis crises in the United States. The purpose of the roundtable was bring together Hepatitis advocacy groups, national organizations, drug manufacturers, and government officials to help attendees gain a better understanding of the political, medical, and social landscapes upon which the Hepatitis game is played.

If that last statement sounds glib and slightly nefarious, it should – the meeting, at times, became quite contentious, as these roundtables frequently do. Any time you put a large number of people together in one room, each of whom answer to different stakeholders, tempers tend to flare, emotions run high, and civility can take a backseat. This is the nature of the high stakes game of addressing infectious disease action plans, policies, and expenditures.

Perhaps the biggest issue that faces those attempting to address Viral Hepatitis (VH) is one of clarity – virtually every representative in the room made some argument that their biggest hurdle was the lack of comprehensive information of one sort, or another.

From the Centers for Disease Control and Prevention (CDC) Division of Viral Hepatitis’ perspective, the information gap centers primarily around the lack of consistent surveillance techniques, data, and reporting:

Each state collects data about Hepatitis differently…if they collect data, at all. Because the CDC has yet to specifically define how to track VH, each state has its own interpretation of how they monitor and account for the virus. Some states track acute Hepatitis, others track chronic cases, and some simply don’t track the virus at all. As a result, attempting to gain a realistic and accurate understanding of the breadth and scope of the epidemic is incalculably difficult.

From the perspective of the Centers for Medicaid and Medicare Services (CMS), the information gap centers around the cost of treatment:

What differentiates Medicaid from Medicare is that the latter is a national federal program, making it much easier to plan for the cost of treatment. Because Medicare is legally prohibited from bargaining for better drug prices, the cost of drugs is stable, across the board – it is easily quantifiable and expenditures can be accurately tracked.

Medicaid, however, does not benefit from a national infrastructure – it is 56 different programs, each of which has its own negotiated pricing agreement with pharmaceutical companies. This means that there could ostensibly be 56 different prices being paid for the same drug. This makes quantifying the cost the Medicaid on a national level much more difficult.

Complicating the process is the fact that publicly releasing the prices being paid by each Medicaid program is prohibited by law. As a direct result, Federal monitoring of drug costs must rely on antiquated pricing averages – Average Wholesale Cost (AWC), Wholesale Acquisition Cost (WAC), and National Average Drug Acquisition Cost (NADAC) – which do not accurately reflect the prices that are actually being paid.

An additional frustration for CMS is the lack of transparency on the part of pharmaceutical companies. These private entities are extremely secretive about the formulas they use to determine the price of their drugs. This lack of clarity has become a hot topic, in recent years, thanks in no small part to the high price of HCV therapies.

Participants at the meeting, when attempting to ask why releasing the actual prices being paid by Medicaid programs, were met with the argument, “Well, the pharmaceutical companies aren’t being transparent about why their drugs cost so much.”

These types of non-answers leave everyone with a bad taste in their mouths. The CMS is unhappy, because advocates and organizations keep needling them for information they cannot legally release;

Advocates are frustrated, because no one will explain why it’s illegal to release this information to the public, as Medicaid is a taxpayer-funded program, and this information should be made available without filing a Freedom of Information Act (FOIA) request.

Hepatitis organizations are frustrated by the lack of accountability this type of answer exemplifies. CMS’ response attempts to take the onus of responsibility and place it directly upon pharmaceutical companies, despite the argument made by pharmaceutical companies that, as private entities, they are entitled to their proprietary information. As a result, HCV organizations find themselves attempting to get specific pricing answers from both private and public entities, both of whom redirect those requests to the other.

A big issue that kept resurfacing throughout the roundtable was the lack of clarity around why the Medicaid Prior Authorization (PA) requirements are more rigorous for HCV therapies than for virtually every other disease or condition. Again, because there are 56 different Medicaid programs, each program has its own set of PA requirements, some of which have come under heightened scrutiny.

One of the more onerous requirements involves behavioral or lifestyle prerequisites in order to receive approval for treatment. According to several representatives present, some of these requirements include abstinence from alcohol consumption and/or intravenous drug use. The apparent thinking behind these restrictions is that treatment is too expensive to “waste” on clients who will simply be re-infected at a later date.

This places HCV in the unique position of being one of the only conditions for which treatment is predicated upon whether or not those infected are exhibiting certain behaviors. Perhaps the best comparison made by one of the participants was to HIV treatment – how would the conversation go if receiving treatment for HIV was predicated upon whether or not the client abstained from sexual activity?

From the Office of Management and Budget (OMB), the lack of clarity revolved around the disparity in funding levels between HIV and VH:

In a very informative set of slides, the OMB representative provided estimated infection rates – HIV – 1.17 million; VH – 3.6 million – versus the funding levels for those respective diseases. Funding for HIV far outstrips that for VH, despite the cost of a curative treatment being lower (meaning a one-time cost, for most patients, versus a lifetime expenditure for many Medicaid/Ryan White clients).

What the OMB rep also accurately pointed out is that, in the world of disease funding, every cause is very protective of the money funneled to their particular cause, and HIV advocates, in particular, are loathe to even discuss the possibility of reallocating HIV funds for us in VH initiatives.

From my own perspective, the incredulity expressed over the spending disparity between HIV and VR is somewhat misplaced. We’ve been dealing with HIV for almost 35 years, and for the first half of those years (at least), HIV was seen as a death sentence for anyone unfortunate enough to become infected. It should, therefore, come as no surprise that more funds are allocated for HIV, than for VH.

Additionally, the viruses have fundamentally different “infection-to-death” timelines, when left untreated. HCV, as an example, is a relatively slow-acting disease – as one person so aptly phrased it, “When someone is diagnosed with HCV, the narrative is, ‘They’ve got maybe another 30 years.” HIV, however, poses far greater risks to patients who go untreated, as the nature of the virus leaves its host highly susceptible to death by way of secondary infection.

This explanation, however, rarely provides a true sense of urgency and understanding to people who are not infected with HIV, not involved in the community, aren’t as educated about the virus, or who are only looking at numbers on a page. As many times in as many ways as people can explain the peril, until HIV actually has an impact upon someone, it’s very difficult to comprehend the nature of the threat.

All of these issues of clarity boil down to one significant sticking point – resources are scarce. Neither the Federal nor state governments has the money or the manpower to actively pursue a comprehensive plan of attack on VH issues.

Surveillance is bad, data is incomplete, and, realistically, that situation isn’t likely to change any time soon. Testing, reporting, and tracking all cost money – money that just isn’t there to spend.

Programs tasked with treating or paying for HCV treatments are focused more on immediate, short-term costs, rather than looking at early, fast-acting, easily tolerate curative treatment in terms of long-term savings. With Conservative austerity policies being the flavor of the week, that’s unlikely to change in the current political environment.

Those austere spending policies in place, everyone’s “piece of the pie” is what it is – if you give more money to VH, it has to come from somewhere else, and no one’s willing to forego their own dollars. And, regardless of how many people say we “…need to ask for a bigger pie,” the political reality is that we’re more likely to get a smaller pie, after the dust settles. That is unlikely to change.

It’s a sad reality to face, but the big issue is money, on every front, and no one has a clear picture of how to get more of it; moreover, without transparent pricing information, we’re unlikely to wind up with a clear strategy for how to spend what money is there.

Lest one think that I left this roundtable feeling enervated and hopeless, that’s not the case. Rather, I find myself more dedicated to continuing the course of my research efforts, and doing my best to refine them; to finding better ways to get around the CDC’s lack of clear reporting requirements in order to provide a hopefully clearer picture of the “real” state of the HCV epidemic in the U.S. For those of us who have dedicated our lives to serving the HIV community, transitioning over to HCV is a natural step, resources be damned.

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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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