Monthly Archives: December 2016

2016 Year in Review

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

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

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

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

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

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

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

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

2017 pushing 2016 down

Photo Source: Fotolia by Adobe

Overall, 2016 has been something of a rough year, with less than glowing reports coming from virtually every sector of the HCV advocacy arena. And, if we’re being honest, we face uncertain times in 2017, with many of us watching and waiting for signs that we’re moving in either direction. This is the most frustrating part for virtually all parties involved: we just don’t know what’s next, nor do we know how or for what to prepare. And with that, we bid 2016 adieu.
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Disclaimer: HEAL Blogs do not necessarily reflect the views of the Community Access National Network (CANN), but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about Hepatitis-related issues and updates. Please note that the content of some of the HEAL Blogs might be graphic due to the nature of the issues being addressed in it.

 

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Lessons Learned About HCV and Aging

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 Thursday, December 8th, the Community Access National Network (CANN) hosted a community roundtable on Hepatitis C (HCV) and Aging at the Pharmaceutical Research and Manufacturers of America® (PhRMA) headquarters in Washington, D.C. The event featured four presenters – Ambrose Delpino (PharmD, practicing HIV pharmacist [AAHIVP], Senior Manager, Virology, Walgreens), Fabian Ancar (a patient who successfully achieved a Sustained Virologic Response [SVR] while co-infected with HIV and HCV), Marissa Tonelli (Senior Manager of Capacity Building, HealthHIV, and Senior Manager of HealthHCV), and Chris Taylor (Senior Director, Hepatitis, National Alliance of State and Territorial AIDS Directors).

Of the four presenters, Dr. Delpino presented the most statistically pertinent presentation (as the others spoke primarily about their experiences, research, and how their organizations engage in advocacy on the local, state, and Federal levels), and the statistics that we’ll be reporting, here, are from his slides. Some of the issues raised during this panel will be further explored in further posts, so this entry will serve as a summation of his main points.

On the basics of infection, Dr. Delpino’s presentation reported that 2.7–3.9 million Americans are estimated to be infected with HCV, with an estimated 17,000 new infections annually. Both he and HEAL Blog note that this estimation is likely very low, as HCV screening, disease monitoring, tracking, and reporting are notoriously problematic, as capturing certain populations (e.g. – Rural, People Who Inject Drugs (PWIDs), et cetera) is difficult at best. It is also estimated that one in thirty Baby Boomers (people born between 1945-1965) are infected with HCV – five times greater incidence than other adults. The estimated cost to the healthcare system, including HCV-symptom-related hospitalizations and treatments is estimated to be over $80 billion over the next ten years.

The primary reason why Baby Boomers (the “birth cohort”) are so much more likely to be infected is related to the facts that HCV is a relatively new discovery in terms of diseases, blood supplies were not adequately screened for HCV prior to 1992, and universal precautions related to sanitation were not, prior to the discovery of HIV, necessarily the standard of care (SOC). This means that anyone who received a blood transfusion or any other blood product prior to 1992 is at risk of having contracted HCV; this also means that anyone who received transplanted organs or had improperly sterilized equipment used on them prior to universal precautions being in place is also at risk.

Outside of the birth cohort, it is estimated that 60% of all HCV infections are believed to be related to injection drug use (IDU). For every 100 people infected with HCV, 75-85% will develop a chronic infection, 60-70% will develop liver disease, 5-20% will develop liver cirrhosis, and 1-5% will die as a result of their infection. What makes this frustrating for HCV advocates is that the cost per SVR in a single 12-week round of the most popular treatment (Harvoni – $94,500) is far less expensive in the short term than the long-term costs associated with chronic HCV infection.

In future posts, we will be examining the pipeline process that it often takes for patients infected with HCV to receive medications to treat their disease, one of the most compelling slides in Dr. Delpino’s presentation. We will also be sharing some of the personal testimony of the patient, Fabian Ancar, whose story was presented at the panel.

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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 Americans Still Lack Access to Syringe Exchange Programs

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 HEAL Blog  covers the expansion of Syringe Exchange programs as an effective and proven method of Harm Reduction to prevent the spread of HIV and Hepatitis C (HCV). While there have been some notable successes over the past few years, especially in states where rural transmission of both HIV and HCV is increasing, the stark reality is that these areas largely lack access to the Syringe Exchange programs that could help to stanch the spread of deadly diseases that are easily spread through sharing and reusing needles.

A new report from the Centers for Disease Control and Prevention (CDC), decreases in HIV diagnoses in People Who Inject Drugs (PWIDs) indicate success in HIV prevention. However, emerging behavioral and demographic trends could reverse this success (Wejner, et al, 2016). In terms of demographics of PWIDs, both African-Americans and Hispanic populations have seen consistent and rapid downward trends in all three areas: HIV diagnoses among PWIDs, those who shared syringes to inject drugs, and people who reported injecting drugs for the first time. Whites, but urban and non-urban, however, did not fare well in these measures.

In both Urban and Non-Urban settings, new HIV diagnoses amongst white PWIDs saw a slight increase; the same is true of whites who shared syringes to inject drugs; whites made up over 50% of people who reporting injecting drugs for the first time. This shouldn’t come as a big shock to those who have been following drug usage trends – the abuse of opioid prescription drugs and heroin in rural and suburban areas has spiked significantly, over the past twenty years, as we have covered in previous posts – areas where the population tends to skew heavily to the White.

Sign reading, "HIV Needle Exchange"

Indiana Needle Exchange

While Syringe Exchange Programs (SEPs) have grown more common in urban areas, people living in largely rural states, rural areas, and suburban areas have again fared poorly in this regard. A 2015 report from the CDC surveyed 153 SEP directors (out of the then 204, in March 2014), and found that only 9% of SEPs were in Suburban areas and only 20% in Rural areas (Des Jarlais, et al., 2015). The areas hardest hit by the increase in PWIDs – the Northeast, South, and Midwest – had a total of 11 SEPs in Rural areas; the West, by comparison, had 18 in Rural areas. While this data is from 2013, and more SEPs have been opened, it is difficult to get a definitive count of the number of operative SEPs.

From a health emergency perspective, we have a White HIV crisis brewing in rural and suburban America. Beyond the issues related to PWIDs, there is also the increase risk of sexual transmission from PWIDs to those who do not inject drugs. Whites have consistently represented the largest number of new infections, since the beginning of the epidemic (not to be confused with the disproportionate rate of infection amongst minority groups), and for the first time in 2014, White PWIDs had more HIV diagnoses than any other racial or ethnic population in the country (Sun, 2016). State and Federal laws – especially in rural states – continue to present barriers to establishing and funding SEPs in areas that are the hardest hit.

One of the most frustrating aspects of reporting healthcare statistics is the reporting lag; the references used in this post present data that is at least two years old. This problem exists because of the time it takes for states to finalize data, in addition to the time it takes for peer reviewing before publication. While there were 204 operating SEPs in the U.S. in 2013/2014, it’s now 2016, and we could use some updated numbers.

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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