Tag Archives: CDC

Opioids Drive Hepatitis C Infections in New CDC 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

The Centers for Disease Control and Prevention (CDC) has released new data that estimate that approximately 2.4 million adults are living with Hepatitis C (HCV) in the United States (Hofmeister, et al., 2018). This estimate was reached by analyzing 2013-2016 data from the National Health and Nutrition Examination Survey to estimate the prevalence of HCV in the non-institutionalized population in combination with literature reviews and population size estimation approaches to estimate the HCV prevalence and population sizes for incarcerated people, unsheltered homeless people, active-duty military personnel, and nursing home residents (Hofmeister).

Photo of the CDC Headquarters

Source: George Mason University

These data represent the latest effort by the CDC to more accurately reflect the severity of the HCV epidemic in the United States. The accuracy of this estimate has been significantly hampered by the failure of the CDC to classify HCV as a mandatorily reportable condition (like HIV). Instead, the CDC has left up to individual states whether or not they consider HCV a reportable condition, which has led to a range of wildly varying approaches from no reporting whatsoever, to incredibly detailed reporting that goes down to the county and/or jurisdictional level. These variations have led to certain states providing no functional data about the incidence or prevalence of this deadly virus in their states.

One of the primary drivers of new HCV infections has been the prescription opioid and heroin epidemic that extends into virtually every corner of the U.S.:

Earlier CDC research found that new hepatitis C cases tripled between 2010 and 2016. Most were traced to injection-drug use among younger adults addicted to heroin and other opioids. Adults under 40 have the highest rate of new infections (Norton, 2018).

In states where Injection Drug Use (IDU) is highly prevalent (suburban and rural areas of New England, the Midwest, and Appalachia), IDU accounts for a significant percentage of new HCV infections – in West Virginia and Massachusetts – the states with the second- and first-highest rates of HCV infection respectively – evidence suggests that it is the leading risk factor identified in HCV incidence reporting.

The recent news that Medicaid was expanded by voter ballot initiatives in Idaho, Nebraska, and Utah brings some hope that people living with HCV in those states will gain access to curative treatment. That said, even with Medicaid programs paying for treatment, it is both far cheaper, and more effective to prevent infection, rather than to play “Recovery Medic.” This can be effectively accomplished by establishing (and adequately funding) Syringe Services Programs (SSPs) which have been shown to reduce the number of new infectious disease infections and increase access to and utilization of drug abuse recovery services. Unfortunately, according to a 2017 CDC study, only three U.S. states have laws that “support full access” to both SSPs and HCV treatment (Norton).

For those of us in the HCV data game, these data are of little surprise. While this latest CDC estimate is down from the previous one, there are factors to consider when looking at this decrease: the introduction of HCV Direct-Acting Antivirals has decreased the number of people living with HCV as access to these medications has increase and people who wereliving with HCV have died in greater number as their disease ravaged their livers and other bodily organs. Essentially, people either got cured, or they died (Norton).

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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Rural America Continue to Struggle with Opioid Addiction

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 1999, the Centers for Disease Control and Prevention (CDC) reported that drug overdose deaths were higher in metropolitan (urban) areas than in non-metropolitan (suburban/rural) areas – a rate of 6.4 vs. 4.0 (per 100,000). In 2015, that trend has reversed, with non-metropolitan overdose deaths more than quadrupled in number with a rate of 17.0, while metropolitan areas had a rate of 16.2 (CDC, 2017).

From these data we can surmise a few things:

  1. The population in the U.S. did not decrease from 1999 (279 million) to 2015 (321 million);
  2. Despite this population increase (+42 million), the total number of drug overdose deaths has increased exponentially;
Medical technician counting needles.

Photo Source: Daily Beast

So, what changed during this period? According to the American Society of Addiction Medicine, from 1999 to 2008, overdose death rates, sales and substance use disorder treatment admissions related to prescription pain relievers increased in parallel:

  • The overdose death rate in 2008 was nearly four times the 1999 rate;
  • Sales of prescription pain relievers in 2010 were four times those in 1999;
  • Substance use disorder treatment admission rate in 2009 was six times the 1999 rate
  • In 2012, 259 million prescriptions were written for opioids – more than enough to give every American adult their own bottle

Along with these sobering (as it were) statistics, four out of five heroin users started out abusing prescription painkillers. Also, 276,000 adolescents aged 12-17-years-old were current non-medical users (abusers) of prescription pain relievers, with 122,000 having an addition to prescription pain relievers. 21,000 adolescents had used heroin in the past year, and an estimated 5,000 were current heroin users (American Society of Addiction Medicine, 2016)

Essentially, as the rate of prescribing opioids increased over time, so too have the rates of addiction and overdose deaths. That said, the opioid prescribing rate has declined from 2012-2017 and is currently at the lowest level in ten years, from 259 million in 2012 to 191 million in 2017.

Even with this decline, reversing the damage already done is going to take at least a generation to fix, particularly when it comes to adequately addressing opioid and heroin addiction (inclusive of treatment, recovery, and relapses). Moreover, there are vast disagreements in how we, as communities, counties, states, and a nation, should best go about dealing with these issues.

Despite the fact that we have hard scientific data and evidence that certain measures work better than others (e.g. – Harm Reduction measures like Syringe Services Programs (SSPs) and Medication-Assisted Treatment (MAT)), it is difficult to convince elected officials to legalize, authorize, and fund these measures. This is largely due to long-standing, albeit factually inaccurate, objections that SSPs are essentially “enabling” or “condoning” drug use and abuse.

One small town in Washington state – Stanwood – has decided to approach their burgeoning opioid addiction problem like they would a natural disaster, the same way they would mobilize and respond to a landslide or flu epidemic:

…the response to the opioid epidemic is run out of a special emergency operations center, a lot like during the Oso landslide, where representatives from across local government meet every two weeks, including people in charge of everything from firetrucks to the dump (Boiko-Weyrauch, 2018).

The name of this group is the Multi-Agency Coordination group (MAC group), and has seven big, overarching goals which are broken up into manageable steps, like distributing needle cleanup kits and training schoolteachers to recognize trauma and addiction. Police officers enter illegal homeless encampments in wooded areas not to arrest them, but to help link them to drug treatment and housing resources, as well as to provide other assistance, such as food, coffee, and transportation to and from appointments (Boike-Weyrauch).

This approach to policing the opioid epidemic is slowly becoming more popular, but again, convincing states, counties, and local municipalities to adopt this strategy is incredibly difficult due to the long-standing opposition against the use of public resources for these purposes. The concept of treating addiction as a disease, rather than as a crime to be punished isn’t an easy pill to swallow for those who believe that only the individual is responsible for dealing with their health issues; who have abandoned the concept that addressing the welfare, health, and safety of all citizens will lead to greater results than leaving people to their own devices.

As part of the Community Access National Network’s ongoing research, we provide state-by-state analysis of various Harm Reduction measures (e.g. – SSPs, Naloxone Access, and Provider Education Requirements) in our monthly publication, the HIV/HCV Co-Infection Watch. Our October edition can be found here: http://www.tiicann.org/co-infection-watch.html

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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South Carolina Has a Liver Problem

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

It is the conventional wisdom that the Southern United States play host to health epidemics of several sorts – obesity, premature deaths, diabetes, heart disease, higher risks of cancer… To say that health issues in the South are prevalent is to say that the Great Pyramid of Giza is a small rock formation. With all those troubles, South Carolina has a growing problem: liver cancer deaths.

In just six years (2010-2016 – the best available information) liver cancer deaths rose 43% in adults aged 25 and older. When you focus on age groups, adults aged 55-64 saw a staggering 109% increase (National Center for Health Statistics, 2018). The rate of death in South Carolina falls in the range of 10.0-11.9 (per 100,000 – the NCHS report doesn’t list the specific rates), putting it above the national average, and sadly, three other Southern states – Texas, Louisiana, and Mississippi – all have higher death rates from liver cancer.

South Carolina

Photo Source: aventalearning.com

This rise in liver cancer deaths conveniently (for lack of a better word) coincides with a sharp increase in the number of Hepatitis C (HCV) infections. HCV is a disease that specifically impacts hepatic (liver) health and function, and the NCHS report indicates that HCV is likely the greatest factor in this increase (Osby, 2018).

Essentially, part of why HCV incidence reporting is so finicky is that testing and screening protocols are not standardized across the U.S. Each state essentially establishes its own screening guidelines, and the vast majority have failed to update said guidelines to reflect the growing face of the epidemic at hand – Injection Drug Use (IDU). Certainly, the U.S. Centers for Disease Control & Prevention (CDC) recommends testing for anyone who is or has participated in IDU, but the reality is that few people are willing to come forward about those actions on a voluntary basis; how can a physician proactively test patients for HCV if they don’t disclose current or previous IDU?

One step to help identify HCV infections, for which HEAL Blog has advocated, is using emergency care settings as mandatory HCV screening locations. The thinking behind this is that, rather than attempting to ferret out potential IDU among patients, HCV testing should be offered to all Emergency Room (ER) patients, regardless of apparent risk factors. Heck, even a half measure of testing every overdose victim in emergent care situations (on 911 calls and ER arrivals, for example, using rapid testing and immediate linkage to care) would be better than the system we currently have in place.

More than just advocacy, research is bearing out this measure. In a study published in Academic Emergency Medicine, HCV tests were performed at Boston Medical Center on 3,808 patients at least 13 years old undergoing phlebotomy (blood work) for clinical purpose (Schechter-Perkins, et al., 2018). The tests were performed in a nontargeted, opt-out method, meaning that patients had to provide informed refusal of the test. The results of this three-month effort resulted in 292 confirmed positive HCV patients (7.7% of all patients tested).

While this number may sound low, the breakdown of those results is telling: 155 of those 292 (53%) fell outside the Birth Cohort (1945-1965) for whom the CDC recommends one-time HCV testing, 46 of whom reported no IDU as a risk for infection. The breakdown, post-testing, occurred (as it usually does) with attempted linkage to care: linkage attempts were documented on 223 76.4% of those identified as testing positive for HCV, and follow-up appointments were scheduled for 102 (38% of attempted linkages). Only 66 out of 292 attended that follow-up appointment (22.5% of all RNA-positive patients).

So…is it the best solution? Potentially, given the abject failure of state and national politicians to grasp the severity of this epidemic and respond to it with even adequate increases in funding. A few states – California, for example – have responded for those on their Medicaid rosters, but only in terms of affording treatment. How do we treat people who haven’t been tested, particularly if there’s insufficient funding for testing? It’s all going to take money, and if we don’t pony up the costs ahead of time, it’s going to cost all of us exponentially more – in both financial, and human terms – further down the line.

References:

  • National Center for Health Statistics. (2018, July). Trends in Liver Cancer Mortality Among Adults Aged 25 and Over in the United States, 2000–2016, NCHS Data Brief, No. 314. Atlanta, GA: United States Department of Health and Human Services: Centers for Disease Control and Prevention: National Center for Health Statistics. Retrieved from: https://www.cdc.gov/nchs/data/databriefs/db314.pdf
  • Osby, L. (2018, July 23). Liver cancer deaths soar in South Carolina, across the US. Greenville, SC: The Greenville News. Retrieved from: https://www.greenvilleonline.com/story/news/2018/07/23/liver-cancer-deaths-soar-sc-nation/806045002/
  • Schechter-Perkins, E.M., Miller, N.S., Hall, J., Hartman, J.J., Dorfman, D.H., Andry, C., & Linas, B.P. (2018, May 31). Implementation and Preliminary Results of an Emergency Department Nontargeted, Opt‐out Hepatitis C Virus Screening Program. Academic Emergency Medicine. https://doi.org/10.1111/acem.13484

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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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Kentucky Moves to Prevent Vertical Hepatitis C Transmission

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 Commonwealth (state) of Kentucky has become the first state in the U.S. to require pregnant women to be tested for the Hepatitis C virus (HCV). This comes as the state is in the grasp of a crippling opioid addiction epidemic that has led to an increased number of new Acute HCV infections in the Appalachian Mountain region (Smith, 2018). This may, in fact, be the first piece of U.S. legislation that makes mandatory the testing of any specific demographic who are not incarcerated, as I have yet to see another law that requires testing, rather than simply mandate that a certain demographic – usually the Birth Cohort (people born between 1945-1965 – be offeredtesting.

The article cited above makes a curious claim:

“The disease can easily spread from mother to child, so starting this month, pregnant women in Kentucky must be screened.”

This asertion is questionable, at best, as the most recent data I’ve seen from the Centers for Disease Control and Prevention (CDC) indicates that vertical transmission occurs in only 5.8% of infants born to mothers monoinfected with only HCV, and 10.8% of infants born to mothers co-infected with HIV and HCV (Koneru, 2016). While vertical transmission is certainly a concern, the data available do not support the claim being made, nor do they necessitate the passage of mandatory testing protocol. In fact, CDC recommendations, which admittedly have not been revised since 2015, list pregnant women under “Persons for Whom Routine HCV Testing Is Not Recommended (unless they have risk factors for infection)” (CDC, 2015).

HCV Screening

Photo Source: Passport Health

I am certainly in favor of universal screening protocols, as evidenced by myriad HEAL Blog posts calling for expanding testing protocols to make testing mandatory in all healthcare settings. That said, it is curious to me that Kentucky has chosen pregnant women as the target of mandatory testing. The cynic in me wonders if this is truly a forward-thinking approach to reducing incidence of HCV transmission, or if it serves another, less altruistic purpose: using test results to infer opioid abuse.

Much of the HCV epidemic in Kentucky can be traced back to Injection Drug Use (IDU) of prescription or illicit opioid drugs (and occasionally stimulants such as methamphetamine). As of June 2018, in 22 states and the District of Columbia, substance use during pregnancy constitutes child abuse, and in three states ((MO, SD, and WI) can result in civil commitment (Guttmacher Institute, 2018). The state of Kentucky has not, yet, criminalized substance use during pregnancy, but given the current political temperament in the state, it isn’t outside the realm of possibility that state legislators will do so in the future. I fear, though there is no current evidence that this is the case, that legislators may use any findings of increased vertical transmission of HCV – HCV infection that may be attributed to IDU – as cause to join those 22 states and DC.

My secondary concern relates to the affordability of HCV testing. The costs of pregnancy are consistently increasing, while wages have remained relatively stagnant. Kentucky’s poverty rate hovers around 19.0%, which makes the various costs associated with being pregnant already burdensome; adding an additional testing requirement that may increase the amount of out-of-pocket spending for pregnant families is a concern.

Those concerns aside, it is always a good thing when HCV testing protocols are expanded. It will be interesting to see if this change in protocol will result in a higher incidence of new Acute HCV infections, or if it will have the desired impact of reducing vertical transmission.

References:

  • Centers for Disease Control and Prevention. (2015, October 15). Testing Recommendations for Hepatitis C Virus Infection. Atlanta, GA: United States Department of Health and Human Services: Centers for Disease Control and Prevention: National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention: Division of Viral Hepatitis: Hepatitis C Information: Testing Recommendations. Retrieved from: https://www.cdc.gov/hepatitis/hcv/guidelinesc.htm
  • Guttmacher Institute. (2018, June). Substance Use During Pregnancy. New York, NY: Guttmacher Institute: State Laws and Policies. Retrieved from: https://www.guttmacher.org/state-policy/explore/substance-use-during-pregnancy

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

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Hepatitis C in Native American Populations

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 August 2017, HEAL Blog covered efforts by the Cherokee Nation to proactively combat Hepatitis C (HCV) within the tribe’s boundaries in Northeastern Oklahoma (Hopkins, 2017). The program, started three years ago, comprised several steps, including compulsory screening of all tribe members aged 20-69, expanding screening locations to include dental clinics, establishing a Syringe Services Program (SSP) within the tribe’s borders, and using Direct-Acting Antivirals (DAAs) to treat those infected with HCV. The tribe, itself, is absorbing the costs of treating its citizens (Juozapavicius, 2018).

Photo Source: HHS

Map of Cherokee Nation

According to the most recent report released by the Centers for Disease Control and Prevention (CDC), deaths related to HCV have been decreasing in every demographic since 2013, including in Native American (NA) populations. That said, NAs still had the highest rate of HCV-related death in 2016, with a rate of 10.75 (per 100,000), down from a staggering 12.95 in 2015 (CDC, 2018). These data indicate that, while the effort by the Cherokee Nation are certainly proving to be effective, there is still a lot of ground to cover.

As with other race demographics, the leading risk for HCV infection is Injection Drug Use (IDU). Doctor Jorge Mira, Director of Infectious Diseases for the Cherokee Nation, indicates in the Juozapavicius article that, over the past two years, he began hearing the word “heroin” more and more, every day. This trend of IDU is in line with other race demographics. The common factors across race demographics are high levels poverty and unemployment. In areas where these factors are present (particularly in rural settings), heroin use and IDU are almost a given.

The efforts to combat the disease within the Cherokee Nation need to be replicated at the state and Federal levels. The reality is that these problems are not going to go away, and in the areas where they’re most prevalent, they are going to get exponentially worse in the coming years. In the meantime, we can look to the Cherokee Nation for their leadership on the issue, and begin implementing them in small scale at the local level.

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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CDC Releases 2016 Viral Hepatitis Surveillance 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

…and the news isn’t good.

The U.S. Centers for Disease Control and Prevention (CDC) released, last week, the 2016 Viral Hepatitis Surveillance report. Acute Hepatitis B (HBV) infections remained largely stable, while Acute Hepatitis C (HCV) saw a 21.8% increase in new infections from 2015 to 2016. The CDC attributes the continually rising incidence of HCV to rising rates of Injection Drug Use (IDU) and, to a lesser extent, improved case detection (CDC, 2018b).

Photo of the CDC Headquarters

Source: George Mason University

According to the CDC, HCV has seen a 350% increase from 2010 (CDC). Despite this increase, nearly 1 in 5 states do not gather, track, or report HCV data. In 2015, eleven states did not deem HCV a reportable condition; in 2016, that number decreased to nine state (AK, AZ, DC, HI, IA, MS, NH, RI, & WY), as both Connecticut and South Dakota began surveilling the disease. This collection of states is particularly concerning, as many of them are in areas of the country where the burden of infectious disease is high – two states in New England, one in the Midwest, two in the South, and Arizona, which has the 6th-highest incarceration rate in the nation.

This last point is important, as it is estimated that 1 in 3 in U.S. jails and prisons has HCV. Arizona’s high rate of incarceration is particularly troubling, given the ongoing class-action lawsuit against the Arizona Department of Corrections (ADC), Parsons v. Ryan (2012), which not only found that ADC systematically refused to treat inmates, but failed to provide even basic healthcare services. Worse, last year saw both an additional post-settlement hearing in which ADC employees were further accused of both retaliating against inmates who testified, and violating the terms of the settlement in 2,127 incidents (Weill, 2017).

Arizona Department of Corrections is killing prisoners

Photo Source: Survivors of Prison Violence – Arizona

Other troubling statistics involve the changing face of HCV. The three largest increases in new infections occurred in people aged 40-49 years (33.3%), 30-39 years (29.4%), and 20-29 years (12.5%). All of these groups fall outside of the Birth Cohort – Baby Boomers born between 1945-1965 – and indicate that non-medical exposure is likely to be the largest cause of new infectious. More troubling was that people aged 20-29 had the highest rate of infectious of any age group (2.7). This is likely attributable to IDU.

As for race demographics, American Indians and Alaskan Natives are disproportionately impacted by HCV, as a percentage of the population, with an infection rate of 3.1 per 100,000.

More concerning for advocates is that 52.5% of the Acute HCV cases reported to the CDC did not include risk factor data, meaning that states aren’t doing their due diligence during testing/reporting. Of those that did include risk factor data, the data suggest that IDU is the leading risk factor for transmission, with 68.6% of new HCV infections listing IDU as the primary risk factor.

Clearly, the U.S. has more work to do, when it comes to identifying HCV infections. Realistically, it is uncertain that much support will be coming from the Federal level, as even the most benign legislation winds up stalled for whatever reason. Until the composition of the Federal legislature occurs, states will end up shouldering most of the burden in the interim.

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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