Tag Archives: Hepatitis B

Research Indicates Nearly 30% of Opioid Prescriptions Lack Medical Justification

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

HEAL Blog posts frequently discuss the impact the opioid epidemic has upon the spread of HIV, Hepatitis B (HBV), and Hepatitis C (HCV). One aspect that we’ve discussed – prescribing habits – has recently received further study. According to new research published in Annals of Internal Medicine, 28.5% of opioid prescriptions have no record of either pain symptoms or pain-related conditions justifying their prescription (Scutti, 2018).

The study authors go out of their way to suggest that various causes may contribute to this lack of justification – failure to submit documentation, time constraints, clinic workflows, or complicated documentation systems (Scutti). In recent decades, doctors and nurses, alike, have complained about the complicated and seemingly never-ending amount of paperwork involved in providing even the most basic of care. Much of this is related to the Electronic Medical Record (E.M.R.) – software programs that are designed to account for virtually everything that can, does, or should occur with a patient. Recent studies indicate that doctors spend a little more than half of their work hours doing administrative work, rather than in face-to-face time with patients (Ofri, 2017).

Rx bottle with medicine on top of an Rx order

Photo Source: MedScape

Essentially, any time an insurer, new law, regulation, or threat of legal action appears, new field (or more) pops up in E.M.R. software that requires input on behalf of the doctor. So, realistically, it is possible that the justifications for at least some of the 28.5% of unjustified opioid prescriptions could just have been lost in the shuffle. Doctors are, after all, only human. Very well-trained, highly educated humans, but humans, nonetheless.

The other side of this argument, however, is that “doctors are human.” Doctors, like every human, are susceptible to poor influences – deals made with pharmaceutical companies to prescribe certain medications that highly addictive in lieu of other medications, for example. Or addiction; manipulation by patients; under the table dealing. At least once a week, I read an article about a doctor whose license is being suspended or revoked because they’ve been illicitly prescribing opioids or other narcotics in exchange for [x], or they’ve been selling them on the side. But, even those instances can’t account for all of 28.5%.

Yet another angle is that these drugs have become increasingly regulated since 2006 (the scope of the Annals study is 2006-2015). Since 2015, even more restrictions have been placed upon opioid prescribing, and in most states, this has resulted in dramatic decreases in the number of prescription per capita. In 2017, the opioid prescribing rate had fallen to the lowest it had been in 10 years (Centers for Disease Control and Prevent, 2017). But, even that comes with additional problems: patients turning to “street” sources for prescription opioids; patients moving off of opioids to heroin (often cut with fentanyl or carfentanil), because heroin is easier and cheaper to obtain; the resultant overdoses and increased risk of infection with HIV, HBV, and HCV.

There is no single solution to curbing the opioid epidemic. Doing so is going to require multiple approaches working in conjunction to defeat the problems. Outside of just prescriber education about opioid addiction and increase prescribing restrictions, we must also include and incorporate patient-focused harm reduction measures, such as increasing access to legal Syringe Services Programs (needle exchanges that also provide screening and testing for diseases and linkage to treatment programs for disease and addiction) and increasing access to addiction treatment programs by expanding the number of available beds.

For far too long, we have attempted to deal with these problems with siloed responses – just syringe exchanges; just prescribing restrictions; just prescriber education. This strategy is not working, and moreover, it is more expensive, in the long-run, to continue funding multiple single-focus initiatives that don’t work in tandem with one another, than it would be bring all of these resources and initiatives into one large effort. But, that will require cooperation and a lot of money up front; it’s far more palatable to fund smaller, less effective initiatives because the “ask” is lower on up-front costs. Realistically, though, it needs to be done.

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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French Study Finds Universal HCV Screening Cost Effective

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 May 2016, the World Health Organization (WHO) adopted a goal of eliminating Hepatitis B (HBV) and C (HCV) by 2030.  Some major nations are on the way to achieving that goal (Australia, for instance); others, like the U.S., are not. One reason why the U.S. is falling so far behind others is that we frequently fail to identify patients who are infected with HCV because the screening guidelines are woefully outdated, focusing primarily on “one-time testing” for patients in the Birth Cohort (those born between 1945-1965) and patients whose doctors knowthey use or have used injection drugs.

Journal of Hepatology

Photo Source: EASL

A new study out of France, however, has found that a combination of universal screening for and immediate treatment of HCV was the most cost-effective way to combat the virus. The study, published in the Journal of Hepatology, found that, using their model which did away with “highest risk” screening models like the one used in the U.S., reduced the incidence of hepatic events (i.e. – cirrhosis, decompensated cirrhosis, and liver-related mortality) in undiagnosed adults over the age of 18. The model also considered treatment initiation for all patients with fibrosis scores of 2 or higher, which resulted in reduced Chronic HCV prevalence in one year’s time; treatment initiation regardless of fibrosis score decreased prevalence significantly. A Healio article on this study has a much better explanation of the findings than the Journal of Hepatologysummary, and it can be found at this link:

https://www.healio.com/hepatology/hepatitis-c/news/online/%7B7c00ba17-af2b-4ddb-b0b2-26c8d6fed926%7D/universal-hcv-screening-in-adults-cost-effective-decreases-prevalence

While universal screening and treatment likely would be cost-effective in France (as well as other countries that offer Universal Healthcare), I predict that it would be incredibly difficult to replicate that finding here, in the U.S., primarily because of the way our for-profit healthcare system is structured. Between being constantly (and increasingly) bilked by private insurers and pharmaceutical companies, and the resultant exorbitant costs of testing and treatment, the U.S. is not currently positioned to adopt this strategy. In order for this strategy to be successful, the U.S. would have to fundamentally overthrow the existing healthcare payor model and adopt an intelligent policy of universal provision – an unlikely occurrence given the current legislative and executive political makeup.

That said, there is little stopping better prepared and positioned nations from adopting this strategy, and ensuring that their nations are able to eliminate HCV by 2030.

References:

  • Deuffic-Burban, S., Huneau, A., Verleene, A., Brouard, C., Pillonel, J., Le Strat, Y., Cossais, S., et. al. (2018, July 01). Assessing the cost-effectiveness of hepatitis C screening strategies in France. Journal of Hepatology. https://doi.org/10.1016/j.jhep.2018.05.027

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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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Efficacy of Syringe Services Programs in Preventing the Spread of HCV

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 two weeks, HEAL Blog has covered two separate counties within the state of California that have taken two very different approaches to dealing with access to Syringe Services Programs (SSPs) and the prevention of the spread of diseases such as HIV, Hepatitis B (HBV), and Hepatitis C (HCV).

This past week, Here and Now, a program produced by WBUR, Boston’s National Public Radio (NPR) station, has also been covering issues related to SSPs in a series of interviews. These interviews included:

  • Chelsi Cheatom, Program Manager for Trac-B Exchange in Clark County, Nevada, which established the nation’s first syringe vending machine in Las Vegas, NV (Here and Now, 2018b);
  • Ricky Bluthenthal, Professor of Preventative Medicine at University of Southern California, who studies the efficacy of these programs (Here and Now, 2018a);
  • Danny Jones, Mayor of Charleston, West Virginia, who has led a very vocal campaign against the county health department’s Harm Reduction Clinic (Here and Now, 2018c)

Each of these interviews provides a set of perspectives that are very important to the discussion of SSPs, their efficacy, and their existence in the U.S. – an academic perspective that researches these issues and argues that data show these programs to be highly efficacious; a program worker who can attest to the successes and challenges of these programs; an elected official who must deal with and respond to the outcry and fallout of the very existence of SSPs creates in local settings. While each of these perspectives are important, it is Mayor Jones’ take on the issues in Charleston, WV with which I take issue.

Mayor Jones has, for the past five months, been waging a war against Kanawha County’s Harm Reduction Clinic, and he has, unfortunately, won. As of May 14th, the Clinic is now officially suspended by the state of West Virginia in response to an audit requested by Jones and Interim Health Officer Dr. Dominic Gaziano. The reasons for the suspension, and the findings of the audit, indicate that the clinic failed to build and maintain community support, lack of data indicating that drug users were actually informed of other programs (including treatment and recovery services), insufficient evidence to support the safe recovery and disposal of needles, and insufficient evidence regarding the total number and types of referrals made to drug treatment programs (Takitch & Hoak, 2018).

Kanawha-Charleston Health Department

Photo Source: WV Metro News

I began interviewing the head of the Kanawha County Clinic in September 2017 regarding the successes and challenges of establishing SSPs in the state of West Virginia. This Clinic, in particular, faced significant challenges because it served as one of only two public SSPs that served clients from 9 southern WV counties (Boone, Cabell, Kanawha, Lincoln, Logan, Mason, Mingo, Putnam, and Wayne). Since our conversation, two addition clinics have opened, but they are further East, and stilldo not serve those communities.

To put this into better perspective, here are some frightening statistics regarding HCV in those counties:

  • The rate of new Acute JBV infections in the state of West Virginia is 14.6 (per 100,000) – the highest rate in the nation
  • The rate of new HCV infections in the state of West Virginia is a staggering 7.2 (per 100,000) – the highest rate in the nation
  • The rates of HBV and HCV infection for the aforementioned counties are as follows (WVDHHR, 2018):
    • Boone – (HBV) – 34.2; (HCV) – 0.0
    • Cabell – (HBV) – 17.6; (HCV) – 10.3
    • Kanawha – (HBV) – 29.2; (HCV) – 14.9
    • Lincoln – (HBV) – 56.0; (HCV) – 0.0
    • Logan – (HBV) – 17.3; (HCV) – 8.6
    • Mason – (HBV) 25.9; (HCV) – 0.0
    • Mingo – (HBV) 31.6; (HCV) – 7.9
    • Putnam – (HBV) 28.1; (HCV) – 3.5
    • Wayne – (HBV) 14.6; (HCV) – 0.0
  • The state of West Virginia has an overall drug overdose death rate of 52.0 (per 100,000) – the highest rate in the nation
    • Roughly 86% of those overdose deaths were opioid-related
    • WV has the highest rate over opioid overdose deaths in the nation, with a rate of 44.9
    • These nine counties have the highest rates of drug overdose deaths in the state of West Virginia

To say that the burden placed upon the Kanawha/Putnam Harm Reduction Clinic was high is a gross understatement. If you notice the rate of HCV being lower in some counties, it’s because the state only requires that physicians offer HCV testing to people in the Birth Cohort (born 1945-1965) unless the physician knows about another risk factor in a patient, meaning that patients are disinclined to say they inject drugs. So, HCV cases very likely exist, there, but physicians are not required to test for it on a regular basis, which is dumb, given the high rates of Injection Drug Use in those counties.

In addition to serving essentially nine counties, the Clinic had to do so on a shoestring budget, as state law prohibits the use of funds for specific drug-related expenditures. They had to secure funding for syringes and disposal on their own, meaning significant time was spent fundraising to pay for the very reason why they were there.

Additionally, the Clinic repeatedly requested funds for the purchase and installation of Biohazard Disposal Kiosks – steel, locked mailboxes into which sharps can safely be disposed. Each individual unit costs around $1,500, which includes the cost of purchase, shipping, signage, and installation. The county refused to fund these kiosks (which didn’t stop the Mayor and Police Chief from complaining about the additional biohazard sharps waste around the city), and they were only able to secure funding for a single unit – funding which came notfrom the health department budget, but from the Emergency Medical Technician budget, who were kind enough to supply the funds.

The arguments being made by Mayor Jones and the Police Chief are understandable – there has been an increase in needle waste in the city of Charleston and the surrounding areas…in no small part, because the city steadfastly refused to pony up the funds to install disposal kiosks in these areas.

Additionally, both men argue that the privately run facility – Health Right – is doing a better job of providing the service. Perhaps, this is because each client has to be enrolled and create a paper trail to participate? For anyone who’s ever worked with, done research about, or been around People Who Inject Drugs (PWID), the last thing they want to do is create a paper trail that authorities can use to follow them back to their homes and arrest them for illicit drug use, possession, and possession of paraphernalia. This is why the Kanawha facility had exponentially more clients than Health Right – they weren’t creating a paper trail.

Did the Kanawha/Putnam County Harm Reduction Clinic have its issues? Absolutely. The program operated for barely three years, and there will always be a learning period. But, thanks to the unreasonable efforts of Danny Jones, PWID in those nine counties now get to enjoy traveling even further to obtain clean supplies.

Mark my words – this is going to have a serious deleterious impact on the already-highest-in-the-nation infection rates in the state of West Virginia.

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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“OC” Shut Down the County’s Only Syringe Services Program

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

Last week, HEAL Blog covered San Francisco’s multi-pronged approach to dealing with public health among People Who Inject Drugs (PWIDs) and health concerns related to Injection Drug Use (IDU). This week, we’ll visit the southern part of the state – Orange County.

Photo Cover of the OC Weekly

Photo Source: OC Weekly

For those unfamiliar with Orange County, either from the salacious Bravo “reality” series involving housewives, or from Disneyland, the OC is virtually the opposite of all things San Francisco. Long considered a Conservative bastion for the rich and ridiculous, Orange County is home to some of the most ludicrous local regulations and laws – regulating that street lights be turned off by 10 PM to avoid “light pollution;” regulating the length of grass and the design of doors on houses; one town attempted to ban flip-flops. The county has long been the butt of jokes, and deservedly so.

It should, then, come as no surprise, then, that Orange County recently shut down the county’s only Syringe Services Program (SSP) in Santa Ana in January 2018 by denying it a permit (Graham, 2018). This move came after a massive Hepatitis A (HAV) outbreak spanning the southern California coast from San Diego to Los Angeles (between which Orange County lies) primarily within homeless and PWID communities in 2016-2017. At the time, Orange County officials failed to follow the leads of San Diego, Santa Cruz, and Los Angeles Counties in declaring a public health emergency, deciding instead to continue with their protocol of vaccinating and educating their homeless population…which many cities within the county have criminalized (Vo, 2017). Not only did they fail to recognize that the HAV outbreak in surrounding counties could spread to them, they failed to enact any of the proactive sanitation recommendations put forth by the California Health and Human Services that were instituted in San Diego County.

Following this regressive trend, a permit request that would allow the establishment of a mobile SSP in Costa Mesa’s Westside is currently attempting to raise botoxed eyebrows. The justification used by Santa Ana to January permit denial was an “increased number of discarded syringes in the area.” Costa Mesa officials called the proposed mobile SSP a “magnet for drug users” (Fry, 2018).

…because there are no drug users originating from Orange County…

The proposed mobile SSP would serve four Orange County cities – Santa Ana, Anaheim, Orange, and Costa Mesa. These cities were chosen because the Orange County Health Care Agency depicted them as being hotspots for HIV and drug overdoses (Brazil, 2018). Anaheim had the highest number of opioid-related overdose deaths between 2011-2015, followed by Huntington Beach, Santa Ana, Costa Mesa, and Orange. Santa Ana has the highest rate of HIV cases, while Costa Mesa and Orange also have high rates.

Syringe Exchange Program worker providing assistance

Photo Source: LA Times

As for Hepatitis C (HCV) and Hepatitis B (HBV), California, as a whole, has relatively low rates of both – 0.2 and 0.3, respectively. Moreover, the state consistently runs behind on issuing annual reports and epidemiological profiles – the most recent HCV report was issued in 2016, and counts only Chronic HCV cases, which is counter to how the Centers for Disease Control and Prevention (CDC) accounts for HCV counts and rates in the U.S. (they count Acute HCV cases, as Chronic HCV is a long-term disease that is hard to track and may take years to develop). When states account for Chronic HCV cases in their reporting, rather than Acute infections, the data tends to skew toward patients within the Birth Cohort – Baby Boomers born between 1945-1965. This inevitably will wind up excluding PWID and homeless populations, as they are less likely to be screening for HCV, and data from virtually every state in the U.S. indicate that PWID who contract HCV trend younger – 15-45.

The justification in Costa Mesa for denying permits to the Orange County Needle Exchange Program – that it will attract drug users to their fair cities – is ludicrous on several fronts, not the least of which is the simple issue of distance. Anyone who’s ever lived in southern California can tell you that it will likely take you an hour or more to get somewhere during the daytime, and that’s if you’re driving. The suggestion that a mobile SSP will somehow draw PWID from neighboring counties – from Los Angeles, San Bernardino, San Diego, or Riverside, all of which are wellout of walking distance – is just ridiculous.

If the Real Housewives of Orange County taught us anything, it’s that keeping up appearances in Orange County is more highly regarded than adequately addressing serious issues. Orange County, rather than being proactive and attempting to directly confront HIV, HBV, and HCV, are instead trying to maintain the façade of a Pleasantville-esque paradise, where the homeless are invisible and drug users mustbe coming from othercounties. It’s a shortsighted approach, destined to produce lackluster results.

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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Linkages to Care for Current/Former Incarcerated Citizens Living with Hepatitis C

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 Wednesday, April 26th, 2018, Elizabeth Paukstis, Public Policy Director for the National Viral Hepatitis Roundtable (NVHR), joined me in Washington, DC to deliver presentations about Linkages to Care for Current/Former Incarcerated Citizens Living with Hepatitis C. This was the second such meeting held by the Community Access National Network (CANN) in as many years dedicated to the topic of correctional healthcare.

My presentation – Viral Hepatitis in Correctional Settings – included original research conducted by CANN that attempted gather the testing protocols for Hepatitis B (HBV) and Hepatitis C (HCV) from Departments/Divisions of Corrections (DOCs) in all fifty states and the District of Columbia. The findings of this research are as follows:

  • Only fourteen (14) states publicly post specific protocols on their state DOC websites
  • Twenty-five (25) states require or offer HBV testing during intake
  • Thirty-two (32) states require or offer HCV testing during intake
  • Only seven (7) states follow the Federal Board of Prisons’ (BOP) recommendation of offering HBV testing using an Opt-Out delivery model (informed refusal)
  • Only fifteen (15) states offer HCV testing using an Opt-Out delivery model
  • Twenty-three (23) states only test for HBV on inmate request or if they meet clinical criteria (e.g. – inmate has HIV, contact with someone who has HBV, injection drug use)
  • Seventeen (17) states only test for HCV on inmate request or if they meet clinical criteria (Hopkins, 2018)

My report can be found here.

State/Federal HCV-Related Lawsuits Involving Prisons (2017-2018)

Photo Source: CANN

Ms. Paukstis’ presentation – Hepatitis C and Incarceration: Policy Proposals and Challenges – focused on treatment statistics within prisons, the challenges prisons face when procuring prescription drugs, provided a case study regarding Mississippi’s myriad issues related to HCV in their prison populations. Highlights of this presentation include:

  • An estimated 17% of inmates in U.S. state prisons are infected with HCV
  • Less than 1% (0.89%) of those known to have HCV were receiving treatment in 2016
  • The Federal BOP receives at least a 24% discount on HCV drugs – a discount to which state prisons are not privy
  • State prisons are not eligible for discounts under the Federal 340B Drug Pricing Program
  • Incarcerated persons face an additional risk of having their sentences extended if they are charged with “endangerment by bodily substance” (causing a correctional employee, visitor, or another inmate to come into contact with blood, seminal fluid, urine, feces, or saliva)

Download Elizabeth’s report.

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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We Have a Cure for HCV; Few People Can Get It

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

Numerous films and novels have predicted this fate: there’s a fatal disease and someone invents a cure, but nobody can get it, and people die because of it. It’s a metaphor about the dangers of unchecked capitalism – the greedy owner of the cure who holds the rest of the world hostage until his demands are met.

And here it is – 2018, and we’ve had a cure for Hepatitis C (HCV) that’s easily tolerated since 2013, but it’s so prohibitively expensive that private and public payors, alike, have strictly limited access to it. They make patients, physicians, and pharmacists jump through as many hoops as possible to get the cure, from the strictest prerequisite abstinence guidelines, to allowing the disease to progress until it’s “bad enough” to cover it.

Medical Benefits Claim Form with the word, "REJECTED"

Photo Source: NPR

Sure, the cost of the newest drugs to cure HCV have dropped to ¼ of the introductory price of Sovaldi (Gilead), but, still – $30k for eight weeks of treatment? That’s still prohibitively expensive, even with the deep discounts and rebates given to many payors by manufacturers during the negotiation process. Those expenditures are only going to increase.

Now, there is evidence suggesting that undiagnosed HCV is more prevalent than undiagnosed HIV (Torian et al, 2018). Since the 1990s, hospitals and emergency departments have actively touted “routine HIV” screening, but have failed to deliver on those promises:

Lessons from HIV are both instructive and sobering: routine HIV screening is not truly routine; linkage continues to challenge even experienced providers; and linkage and treatment initiation vary widely across sites (Torian et al, 2018).

The findings from this study indicate not only a need to increase screening and linkages to care for HIV, but that this increase needs to be spread to HCV, as well. The latter argument, while correct, is unlikely to occur, in no small part because states and patients simply don’t have the resources to successfully implement this type of public health initiative.

Beyond just testing, minorities and Medicaid recipients – a significant portion of those infected with HCV – enjoy some of the lowest treatment rates in the nation (Wong et al, 2018). Hispanic patients were siginifantly less likely to receive treatment for HCV than white patients, and those on Medicaid, state insurance, or indigent care or no insurance were significantly less like to receive treatment than those with commercial insurance.

That last part comes to a head in rural America, where patients are far likelier to rely upon Medicaid as their primary payor for medical services, and where Injection Drug Use (IDU) of prescription opioids and/or heroin is high. In states like Ohio, Indiana, West Virginia, and Kentucky, IDU and rates of overdose go hand in hand with increased rates of both Hepatitis B and HCV.

The sad reality is that, given the existing political makeup of both state and Federal legislatures, it’s highly unlikely that the significant resources needed to effectively combat the spread of HCV will be allocated. At a time when budgets are being slashed in order to accommodate tax cuts for corporation and the wealthy, to suggest that conservative lawmakers are suddenly going to provide an exponential (or even incremental) increase in funding is unrealistic.

References:

  • Torian, L.V., Felsen, U.R., Qiang, X., Laraque, F., Rude, E.J., Rose, H., Cole, A., et al. (2018, April 04). Undiagnosed HIV and HCV Infection in a New York City Emergency Department, 2015. American Journal of Public Health 108, no. 5 (May 1, 2018): pp. 652-658. DOI: 10.2105/AJPH.2018.304321 Retrieved from: https://ajph.aphapublications.org/doi/abs/10.2105/AJPH.2018.304321
  • Wong, R.J., Jain, M.K., Therapondos, G., Shiffman, M.L., Kshirsagar, O., Clark, C., & Thamer, M. (2018, March 09). Race/ethnicity and insurance status disparities in access to direct acting antivirals for hepatitis C virus treatment. The American Journal of Gastroenterology. DOI: 10.1038/s41395-018-0033-8. Retrieved from: https://www.nature.com/articles/s41395-018-0033-8

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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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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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