Tag Archives: CDC

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The data was (and still is) out of date.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 The data presented on AIDSVu haven’t changed, and when the sites rolled out in 2017, they were already a year out of date, presenting 2014 data, when 2015 had been available for nearly six months.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 In 2017, when the site launched, HepVu was using statistics from 2010 – a full four years out of date with the information that was released by the U.S. Centers for Disease Control and Prevention (CDC) in May 2017. Within a month, the data became five years out of date, as the numbers from 2015 were released in summary, and then in detail by June 17th, 2017.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The expectation that we are going to sway local, state, and/or Federal legislators with data that are not only woefully out of date, but represent years before there was an explosion of new infections, is a pipe dream.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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The Kids Aren’t Alright

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

For nearly three years, healthcare officials and epidemiologists have been sounding the alarm: the face of the Hepatitis C (HCV) epidemic is changing – it’s getting younger by the minute. We, here at HEAL Blog, have been beating that drum alongside them, and yet, the U.S. Centers for Disease Control and Prevention (CDC) has yet to formally change the screening recommendations to reflect the new reality. As more evidence piles up that new Acute HCV infections are largely being driven by prescription opioid and heroin Injection Drug Use (IDU) among Americans aged 15-45.

A piece written by the Digestive Health Team out of the Cleveland Clinic – Why Is Hepatitis C on the Rise in 20- to 29-Year-Olds? – explicitly says as much. In addition, while African-Americans share a disproportionate burden in the epidemic (as a percentage of the population), these issues are particularly pronounced in white, non-urban (suburban and rural) populations living primarily in Appalachia, the Midwest, and New England.

So, what is it about these areas that drives people to abuse prescription opioids, heroin, and/or other illicit drugs? There isn’t just one answer. A lot of the areas where these outbreaks and epidemics are so pronounced share several similarities – struggling economic circumstances; higher-than-average unemployment; less access to and utilization of healthcare services; high rates of Social Security Disability Insurance utilization; economies driven by high-intensity labor industries (mining, for example). Any combination of these factors can lead people to develop substance addictions; that these areas are more remote with fewer outlets and opportunities for employment, entertainment, or social engagement essentially creates enclaves where people can all but disappear into a considerably isolated world of addiction.

Where the kids come in often has to do with the friends, relatives, and other adults whose legitimate opioid prescriptions get unknowingly diverted by experimenting teens who inadvertently become addicted to the highly addictive substances. As a young adult living in a small city in Tennessee in the 2000s, virtually all any of my friends and co-workers wanted to do was find “pills” (primarily OxyContin). Whereas I grew up in the cocaine-fueled 80s and ecstasy-addled 90s, parties in the 2000s were, for my generation, comparatively somber affairs, with everyone pilled out on opioids and barely able to function. Once the U.S. Food & Drug Administration (FDA) started to catch on and legislators began tightening prescribing guidelines, they turned to cheaper and more readily available heroin.

With IDU comes a whole host of risks that, for much of the 80s and 90s – particularly as it related to HIV/AIDS – were made explicitly known. Every health and D.A.R.E. (Drug Abuse Resistance Education) I was made to attend as a child, pre-teen, and teenager included a very graphic section on the dangers of injecting drugs. Almost every school in the 90s had a rumor going around about some random person who was dancing at a nearby club and got stabbed with a used needle and got AIDS. While a lot of hyperbole was involved in these stories, the sense of horror we were expected to evince – “WHAT?!?! A DIRTY NEEDLE?!?!” – led a lot of us to become more risk averse, particularly in our younger years.

Twenty years later? A lot of those fears have been forgotten. We no longer see horrific images of people dying from AIDS – the treatments are amazing, tolerable, and don’t kill you. We aren’t afraid of diseases like HIV or viral hepatitis, anymore, because…well, HIV isn’t a death sentence, and HCV is curable. Hepatitis B is still a huge problem, as it has no cure. But, the reality is that neither the fear of becoming addicted, nor the fear of becoming infected are presently palpable enough to prevent people from even starting. What starts out as a way to kick back with your friends and loosen up can quickly turn into a daily habit and morph into a physical dependency. Once you’re dependent and addicted, the risks become less frightening.

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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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Is it Time for a Rethink on Hepatitis C Care?

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

In the state of West Virginia, any Medicaid beneficiary who is diagnosed with Hepatitis C must personally or through their prescribing doctor consult with either an Infectious Disease specialist or a doctor whose specialty includes Hepatitis C (e.g. – a Hepatologist) in order to have their prescription for Hepatitis C (HCV) Direct-Acting Antivirals (DAAs) approved. In addition, the patient must have a Metavir fibrosis score of F2 or higher as a prerequisite, as well as abstain from illicit drug and alcohol use for a period of 3 months.

These additional barriers to treatment are not only time consuming, but potentially costly. The consultation requirement, alone, exponentially increases the amount of money Medicaid must reimburse just in order to fill a prescription that can now be obtained for potentially $10k per patient (this, according to hearsay, since actual prices paid are forbidden from being made public by existing Trade Secrets laws). Beyond that, even current screening practices tend to require patients to see a specialist, just to get screened for the disease. This is both problematic, and relatively easily remedied.

Barriers to seeing out health care. About 1 in 2 Americans admit they have put off needed health care and have avoided going to a doctor when necessary.

Photo Source: VeraQuest

With the introduction of HCV DAAs in 2013, HCV patients gained access to what was once thought improbable – a relatively easily tolerated “cure” with a high level of efficacy and considerably fewer and less serious side effects. Since that time, an additional nine HCV DAAs have been brought to the market, with newer drugs coming down the pike. The most recent release, AbbVie’s Mavyret, is a potential game changer, offering curative treatment in 8-to-12 weeks for roughly 1/3 to 1/2 the price of the most popular drugs on the market, while sharing essentially identical cure rates. In fact, Mavyret has become the Preferred Drug for several Medicaid Fee-for-Service and Managed Care Organization (MCO) plans since its approval in August of last year.

But, still, issues remain. In West Virginia, the rate of HCV more than doubled from 3.4 (per 100,000 persons) in 2015 (CDC, 2017) to a staggering 7.2 in 2016 (West Virginia Department of Health and Human Resources, 2018). While increased screening may account for this considerable increase, 68% of new Acute HCV infections listed Injection Drug Use (IDU) as the primary risk factor (WV DHHR, 2018), which indicates that increased screening of this community needs to be a priority.

Some of the ways that this can be accomplished is at the regulatory level – requiring screening of all adults in virtually every healthcare setting (e.g. – emergency rooms, primary care, community health centers, urgent care clinics, and correctional settings). In fact, in a simulation model, researchers from Boston Medical Center, Mass. General Hospital, and Stanford University found that this expanded screening protocol would increase life expectancy and quality of life, while also remaining cost effective (Legasse, 2018).

The strategy would also identify an estimated 250,000 more HCV cases than the current U.S. Centers for Disease Control & Prevention (CDC)-recommended strategy of focusing screening efforts on the Birth Cohort – individuals born between 1945-1965 (Green, 2018). This would have a projected benefit of increasing cure rates from 41% to 61%, while also reducing the risk of death from HCV-linked conditions by more than 20% compared to the current CDC guidelines (Toich, 2018).

It is clear that expanding screening to include all adults, rather than focusing efforts on the Birth Cohort and those whose doctors are aware of any other risk factors (because, let’s be honest – few people who inject drugs are open about that with most doctors, unless they’re there for an IDU-related condition or because of an overdose, at which point, it’s pretty obvious). Once we achieve THAT measure, we can move on to allowing Primary Care Physicians and Registered Nurses begin to administer and monitor HCV DAA therapy, because, it’s just not that difficult to do.

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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Young Adults Most at Risk of Hepatitis C Infection Via Injection Drug Use

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

Statistical analyses from around the country don’t lie: our nation’s young adults are driving the Hepatitis C (HCV) epidemic in the United States, and prescription opioids and heroin are the primary risk factor. These data, released by the U.S. Centers for Disease Control and Prevention (CDC) in December 2017, indicate that adults aged 18-39 saw a 400% increase in HCV, 817% increase in admissions for injection of prescription opioids, and a 600% increase in admissions for heroin injection (CDC, 2017). This analysis was made by compiling data from the CDC’s hepatitis surveillance system and from the Substance Abuse and Mental Health Services Administration (SAMHSA) national database that tracks admissions to substance use disorder treatment facilities in all 50 U.S. states from 2004 to 2014.

Photo of the CDC Headquarters

Source: George Mason University

The findings “…indicate a more widespread problem than previous studies have shown,” researchers led by the CDC’s National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention (NCHHSTP) wrote (Connor Roche, 2018). The largest increases were among persons aged 18-29 and 30-39 (400% and 325%, respectively), non-Hispanic Whites, and Hispanics (Zibbell, et al, 2018). Admissions for both men and women attributed to Any Opioid Injection Drug Use (IDU) increased significantly, as did admissions for heroin IDU, and Prescription Opioid Analgesics (POA). Amontg non-Hispanic Whites, admissions for Any Opioid IDU increased 134% over the 11-year period (Zibbell).

What makes this frustrating as an advocate for both HCV and for Harm Reduction measures is the pushback from Conservative and Libertarian organizations and “think tanks” who consistently claim that there is no “opioid epidemic;” that the only real problem we have is heroin and fentanyl (Singer, 2018). The Cato Institute – one such Libertarian organization (founded as the Charles Koch Foundation in 1974) – has consistently misrepresented data about the opioid epidemic in America by focusing only on overdose statistics. Even the statistics they cite – “Digging deeper into that number shows over 20,000 of those deaths were due to the powerful drug fentanyl, more than 15,000 were caused by heroin, and roughly 14,500 were caused by prescription opioids” – come with some caveat that portends to excuse their galling lack of accuracy.

The purpose of the Cato Institute and Mr. Singer’s positions is to attempt to persuade “rational” people that prescription opioids aren’t the real problem, and any efforts to restrict or regulate the dosages, supply days, or “well-meaning, hardworking” healthcare providers who prescribe prescription opioids is obviously absurd. Why, any rational human being would never abuse prescription opioids, and the people who do are the ones at fault; not those innocent physicians who prescribe the highly addictive substances. (/sarcasm)

Counter to the alternate reality created by Mr. Singer, where addiction to the effects of opioids just magically appears, and can’t possibly be related to prescription drugs, that isn’t how addiction works, nor do any of the surrounded data – drug abuse statistics, treatment facility admission records, and HIV/HCV infection data – support his nonsensical claim.

These findings from the CDC should be concerning to Americans. These problems are going to get far worse, before they get better, particularly if people who are addicted lose access to government-, employer-based, and/or privately-funded healthcare coverage. With the removal of the Individual Mandate from the Affordable Care Act in 2017, analysts consistently predict that chaos will ensure within the health insurance marketplaces, which will inevitably result in fewer people having access to affordable healthcare, an increase in unpaid medical and emergent care expenses, and increased prices for everyone.

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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Appalachia’s Opioid Addiction Continues Wreaking Health Havoc

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 Northern Kentucky Health Department (NKHD) has reported a 48% increase in new HIV infections in the region in 2017, with 37 new cases compared to 25 in 2016. In 18 of those 37 cases (48.6%), Injection Drug Use (IDU) was listed as a primary risk factor, compared to just 5 of the 25 cases in 2016 (20%). Further analysis of these data show that the IDU-related new infections were concentrated in just two of the region’s four counties – Campbell and Kenton (Northern Kentucky Health Department, 2018).

Whenever a jump in new HIV infections occurs in Appalachia, I say to myself, “THIS! THIS will be our teachable moment! THIS will be the one that forces [state] to take action!” And, a lot of the time, I’m partially correct. The most common refrain I hear when asking state and local healthcare officials about potential HIV outbreaks is, “We don’t want this to be another Scott County, Indiana.”

Sihe HIV outbreak in Scott County, IN in 2015 (Hopkins, 2017) that saw the county’s number of new HIV infections jump from 5 per year to 216 in two years, states all across American and even the Federal government began taking actions to prevent a similar outbreak. In 2016, Congress partially lifted the ban on Federal funding for Syringe Services Programs (SSPs) – a move once thought virtually impossible given the political climate (All Things Considered, 2016). The Scott County outbreak served as a cautionary tale in state run by Conservatives – “It’s time to get with the times.”

Two hands, with one hold a needle

Photo Source: TheBody.com

Of the 18 IDU-related HIV infections, 78% were co-infected with Hepatitis C (Monks, 2018). Increases in new cases of Hepatitis C (HCV) are often the “canary in the coal mine) that leads healthcare professionals to begin more rigorous screening for HIV, particularly in areas of the country where the incidences of prescription opioid and/or heroin abuse are particularly rampant. Unlike the heroin epidemic of the 1970s, the new opioid epidemic of the modern millennium is set in rural and suburban areas of the country. Of the 220 counties identified by the Centers for Disease Control and Prevention (CDC) as being vulnerable to HIV or HCV outbreaks, 56% are in Kentucky, Tennessee, and West Virginia – the states that rank in the top four rates of Hepatitis B and HCV infections in the U.S. (Whalen & Campo-Flores, 2018).

Across the Ohio River from the Northern Kentucky Independent District, in Cincinnati, the city saw a 40% increase in new HIV infections over 2016, with a total of 129 new infections, 28 of which (22%) were IDU-related (Whalen & Campo-Flores).

HEAL Blog will continue to monitor the situation in Northern Kentucky. After all, nobody wants to be the next Scott County, Indiana

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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Increase in HCV Cases Calls for Updated Screening Protocols

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

We, here at HEAL Blog, attempt to provide coverage of local outbreaks of Viral Hepatitis (VH), as well as to investigate and report them using evidence-based data to accurately characterize the issues at play. What consistently comes to the forefront of Hepatitis C (HCV) infection is the issue of Injection Drug Use (IDU) and the People Who Inject Drugs (PWID). More than any other risk factor, IDU in consistent across Hepatitis A (HAV), Hepatitis B (HBV), and HCV. According to the Centers for Disease Control and Prevention (CDC), in 2015, IDU was reported as a risk factor in 36.1% of all Acute HAV cases, ~34.3% of all Acute HBV cases, and 64.2% of all Acute HCV cases (CDC, 2017).

Hepatitis Screening

Photo Source: JAMA

In the five of the states with the highest rates of HCV – Massachusetts (MA), West Virginia (WV), Kentucky (KY), Tennessee (TN), Maine (ME), and Indiana (IN) – these data are undeniable:

And yet, none of these states have amended their HCV screening protocols to include compulsory “Opt-Out” screening in every healthcare setting. This is folly, at best, and dereliction of duty, at worst. If a state’s responsibility is to ensure the health and welfare of its citizens, it is incumbent upon them to take non-extraordinary steps to expand screening protocols. Moreover, they must begin regularly surveilling and reporting, including detailed risk-factor reporting.

If this sounds “revolutionary,” it’s simply not. Given the high rates of infection, mortality, co-morbidities, and the fact that there is a functional cure for the disease, there is simply no excuse for failing to expand testing to include compulsory “Opt-Out” screening for HCV, particularly in states where IDU is high. Is it expensive? Yes. But, again, when it comes to the health and welfare of people, sometimes short-term expenditures outweigh long-term costs of care. This is why there are grants; this is why people pay taxes.

Some of the most successful screening efforts are being conducted not in traditional healthcare settings, but at Syringe Services Programs (SSPs), which remain controversial among those who say that they promote and encourage drug use. These services are, however, vital to stemming the spread of disease. Perhaps the least successful screening efforts are conducted in incarceration settings, despite having essentially a captive demographic. These efforts are hampered, again, by cost concerns, as, if the results come back “Positive,” they are required by law to treat.

While expanding screening may be initially costly, it is the best way for us to go about eliminating HCV in the U.S.

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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Viral Hepatitis Funding Lowest in States Most at Risk

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) recently released the data related to Viral Hepatitis (VH) surveillance in the U.S. for 2015, and the picture is…grim. While many states saw relatively stable rates of new Acute Hepatitis C (HCV) infections, two states – AL and PA – experienced 100% increases from 2014 (CDC, 2017). CDC funding for states’ respective Viral Hepatitis programs, however, tends to fall short in states where rates of infection are high relative to the population (The AIDS Institute, 2017).

Infection rates are generally calculated by taking the number of total infections, dividing that by a state’s total population, and multiplying that result by 100,000 to calculate how many people, on average, will be infected for every 100,000 residents. For example:

The state of West Virginia reported 63 new cases in 2015; the state has a population of 1,844,000, so 63/1,844,000 = 0.00003416 x 100,000 = 3.416 rate of infection.

West Virginia, despite being the 14th least populous state (including the District of Columbia), has the second highest rate of new HCV infections in the U.S., second only to Massachusetts, which has a rate of 3.7. The following chart lists the top ten states in order of highest infection rate, their respective populations, and the amount of funding in those states for VH:

Chart showing 10 states with highest viral hepatitis infections also having lowest state budgets to combat the disease, including MA, WV, KY, TN, ME, IN, NM, MT, NJ, NC

The above chart seems to be indicative of two things irrespective of a state’s population: (1.) certain states make VH funding a priority, while others do not; (2.) states are simply not receiving enough funding from the Federal government and the CDC to bring their VH programs up to funding levels adequate enough to effectively combat VH.

Each of these states has a number of factors contributing to their respective rates of infection: (1.) Aging populations (Baby Boomers born between 1945-1965); (2.) High rate of Injection Drug Use related to opioid drugs, heroin, or stimulants; (3.) Sharp increase in the number of tests administered, resulting in higher rates of positive results.

What is clear is that funding for VH is woefully inadequate if the U.S. intends to eradicate HCV from the U.S. by 2030.

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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