Tag Archives: HBV

Study Findings Suggest Universal Hepatitis Screening for Cancer Patients

By: Marcus J. Hopkins, Policy Consultant

A study published in The Journal of the American Medical Association Oncology (JAMA) found that many newly-diagnosed cancer patients may be unaware of being infected with Hepatitis B (HBV), Hepatitis C (HCV), and/or HIV (Barrett, 2019). The study examined data from 3,051 patients who enrolled between 2013 and 2017 who received blood tests to determine their HBV, HCV, and HIV status, and is the largest study to date of these viruses in cancer patients.

The Journal of the American Medical Association

Photo Source: JAMA

Of the 3,051 participants, 6.5% of patients had HBV (0.6% with a Chronic HBV infection), 2.4% had HCV, and 1.1% had HIV. Of these patients, 87.3% of HBV-infected, 42.1% of Chronic HBV-infected patients, and 31% of HCV-infected patients were undiagnosed prior to this study’s screening. Researchers noted that these findings comport with infection rates in the general population (Ramsey, et al., 2019).

Most concerning is that many of those who were newly diagnosed with HBV and HCV had no identifiable risk factors for infection (e.g. – injection drug use). The researchers concluded that universal Viral Hepatitis screening of cancer patients may be warranted in order to prevent viral reactivation and other adverse clinical outcomes.

HEAL Blog has been calling for universal screening for years, not only for cancer patients, but for the general population. Numerous studies have found that routine rapid HCV testing (particularly in communities where drug use is prevalent) is incredibly cost-effective in both younger generations and older generations. Current CDC testing recommendations for HCV are incredibly narrow, focusing primarily on the Birth Cohort (1945-1965) and Injection Drug Users. Acute HCV infection data, however, indicate that people aged 18-55 are currently bearing the burden of new HCV infections. With these data in mind, it would be a smart move to expand those testing recommendations.

Undiagnosed and untreated HBV and HCV can both lead to serious health consequences; without universal screening, we will continue to see the hepatic and extra-hepatic impacts of Viral Hepatitis manifest in younger generations. These consequences are not only difficult to endure for patients, but are also incredibly expensive to treat. It is time for the CDC to welcome itself into the 21stCentury and expand screening to all adults.

References:

  • Ramsey, S.D., Unger, J.M., Baker, L.H., et al. (2019, January 17). Prevalence of Hepatitis B Virus, Hepatitis C Virus, and HIV Infection Among Patients With Newly Diagnosed Cancer From Academic and Community Oncology Practices. The Journal of the American Medical Association Oncology. Published online January 17, 2019. DOI: doi:10.1001/jamaoncol.2018.6437
  • Barrett, J. (2019, January 23). Study: Many Cancer Patients Unaware of Hepatitis Infections. Cranbury, NJ: Pharmacy & Healthcare Communications, LLC: Specialty Pharmacy Times: News. Retrieved from: https://www.specialtypharmacytimes.com/news/study-many-cancer-patients-unaware-of-hepatitis-infections

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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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What We Missed in December 2018

By: Marcus J. Hopkins, Policy Consultant

The month of December has tended to be a month of reflection for HEAL Blog – one where we look back on the year we have survived and all the successes and failures that came along with that. While we are doing all that reflecting, however, the rest of the world continues to operate, and news continues to be made. This first HEAL Blog post of 2019 will take a moment to look at some of those stories:

Looking Back

Photo Source: empowerla.org

  • Florida Failing to Treat Inmates

Florida, as per usual, made the news for failing to provide treatment for inmates currently incarcerated by the Florida Department of Corrections (FDOC). This time, two inmates at different correctional facilities have filed complaints against both FDOC, and two of FDOC’s private contractors – the GEO Group and Correct Care Solutions – alleging that the accused parties have violated their civil rights by denying these inmates the “best recognized treatment” for Hepatitis C (HCV).

FDOC has consistently failed to provide inmates with treatment that is the current standard of care, arguing repeatedly in various court proceedings that the cost makes doing so untenable. In this case, wrangling in the private contractors for failing to provide treatment despite the legal requirement (as well as a court ordered preliminary injunction ordering FDOC to do so that has been in place since November 2017) is an interesting take, suggesting that the contractors should be required to comply with the law/court order, regardless of whether or not they’re instructed to do so by FDOC (Schweers, 2018).

We will continue to follow this case s it progresses.

  • New Strains of HCV Found in Sub-Saharan Africa

Research published in Hepatology indicates that three new strains of the HCV virus were found in sub-Saharan Africa (SSA) after examining data from the largest population study of HCV. While currently HCV Direct Acting Antivirals (DAAs) have proven effective in treating HCV in most countries around the world, the presence of these new strains indicate that the regimens may not be as effective in treating strains specific to SSA.

Similar issues exist with the treatment of HIV-2 – a strain of HIV that is concentrated in and around West Africa and is more difficult to treat because it is intrinsically resistant to Non-Nucleoside Reverse Transcriptase Inhibitors (NNRTIs).

The researchers and collaborators looking at these data have expressed the urgent need for more trials to be conducted in SSA in order to ensure that forthcoming DAAs are able to successful treat HCV in the region (Davis, et al., 2018).

  • Potential HIV/HBV/HCV Exposure at New Jersey Surgery Center

Here is yet another story of potential exposure to HIV, Hepatitis B (HBV), and HCV as a result of “lapses in infection control procedures,” this time in Saddle Brook, New Jersey. The exposure risk includes anyone who had procedures at the HealthPlus Surgery Center between January 2018 and September 07, 2018 (Eyewitness News, 2018a). The exposure alert and recommendation for testing includes an estimated 3,800 patients.

After the initial report on December 25thwas filed, ABC7 New York did a follow-up story on December 31stin which they detailed the nature of these lapses in protocol. These lapses include poor drug storage, an outdated infection control plan, and “unacceptable sterilization practices, according to a new state report” (Eyewitness News, 2018b).

From improperly cleaned and disinfected operating rooms, to rust-like stains on improperly stored and/or sterilized surgical equipment, to an undisinfected, blood-stained sheet left unattended on a stretcher in a hallway, the center seems to have gone above and beyond in their efforts to expose as many patients as possible to as many infectious diseases as possible. These myriad problems were so pervasive, the center was forced to shut down for three weeks in September after the New Jersey Department of Health received a complaint.

So far, one person has tested positive and a lawsuit has been filed. HEAL Blog will continue to monitor this story for additional developments in 2019.

As we sally forth into 2019, HEAL Blog will continue to provide weekly coverage of the latest news in Viral Hepatitis, and we look forward to celebrating our sixth anniversary in October of this year.

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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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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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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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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