Tag Archives: Colorado

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The data was (and still is) out of date.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 The data presented on AIDSVu haven’t changed, and when the sites rolled out in 2017, they were already a year out of date, presenting 2014 data, when 2015 had been available for nearly six months.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 In 2017, when the site launched, HepVu was using statistics from 2010 – a full four years out of date with the information that was released by the U.S. Centers for Disease Control and Prevention (CDC) in May 2017. Within a month, the data became five years out of date, as the numbers from 2015 were released in summary, and then in detail by June 17th, 2017.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expectation that we are going to sway local, state, and/or Federal legislators with data that are not only woefully out of date, but represent years before there was an explosion of new infections, is a pipe dream.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

The state of Colorado took the enormous first step towards eradicating Hepatitis C (HCV) in the U.S. by lifting HCV treatment requirements for citizens who receive health benefits from the state’s Medicaid program. The move comes after the American Civil Liberties Union (ACLU) of Colorado filed a class-action lawsuit against the state for continuing to ration HCV care for Medicaid patients, and after health officials in the state asked for those restrictions to be removed (Brown, 2017).

ACLU logo

Photo Source: ACLU

The ACLU has been instrumental in winning treatment for patients living with HCV in the country’s incarcerated populations, filing suits against several states’ Departments of Corrections for failing to adequately supply HCV treatment to inmates whose HCV status is known. Inmates are the only Americans who are guaranteed healthcare coverage under the Constitution after a 1976 Supreme Court ruling found that “deliberate indifference” to an inmate’s medical needs constitution “cruel and unusual punishment” under the 8th Amendment (Estelle v. Gamble, 1976).

In both incarceration settings and state Medicaid programs, various hurdles have been put in place that require patients to do extra legwork to gain access to treatment that the programs must offer in order to save money on what were extremely expensive revolutionary HCV Direct Acting Antivirals (DAAs) that effectively cure patients of HCV. The most expensive of these medications, Harvoni (Gilead), has a Wholesale Acquisition Cost (WAC) of $94,500 ($1,125 per pill) for 12 weeks of treatment – the standard regimen length used to achieve Sustained Virologic Response (SVR – “cure”). Since Harvoni’s 2014 release, several new DAAs have come on the market, and after much outcry from patients, advocates, and the U.S. Congress, prices have been driven down. The most recent DAA therapies – Vosevi (Gilead) and Mavyret (AbbVie) – entered the market at $74,760 ($890 per pill for 12 weeks) and $26,400 ($471.42 per pill for 8 weeks) respectively.

Mavyret, AbbVie’s most recent HCV therapy, has the potential to be a financial game changer for state-run healthcare programs that have struggled to ensure that patients receive the treatment they need while not simultaneously destroying their pharmacy budgets to pay for it. That said, WAC costs serve only as a baseline price for any drug that enters the market, after which the various programs and insurers (payors) begin a negotiation process with the drug manufacturers to determine the final cost paid after rebates, pricing agreements, and deductions. The conventional wisdom is, “Well, nobody pays the WAC price.” Unfortunately, these final prices are not readily available to the public, as they fall under existing Trade Secrets laws that prevent the programs from publicly stating the final cost they pay for the drugs.

AbbVie's Mavyret medication

Photo Source: AbbVie

State Medicaid programs have been under considerable fire from HCV advocates, as well as the Department of Health and Human Services (DHHS), who have long stated that Medicaid programs should remove barriers to treatment that have included fibrosis score requirements (“Is the patient’s liver damaged badly enough?”) and abstinence from drugs or alcohol. Colorado’s removal of these barrier to care is a phenomenal first step that should be followed by other state Medicaid programs.

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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More Sad News on the Home Front

By: Marcus J. Hopkins, Blogger

LOGO: Center for Improving Value in Health Care (CIVHC)

Photo Source: CIVHC

A May 19th report from Colorado Public Radio cited a study from the non-profit Center for Improving Value in Health Care (CIVHC) that found that, “…in spite of the availability of new revolutionary drugs, 89 percent of Coloradans [in] (sic) with Hepatitis C did not receive any treatment for their condition.” This number was reached by analyzing claims data from the Colorado All Payer Claims Database (CO APCD) for the commercial insured (excluding those on self-insured plans), Medicaid, and Medicare Advantage members in 2013 and 2014.

What makes this study so frustrating, for me, is that I’ve been following the progress of Colorado’s healthcare system as it relates to HCV and HIV since the beginning of 2015, and have to say that, while there will always be some people who are denied coverage, Colorado’s healthcare provisions are some of the best in the nation, particularly for co-infected patients living in the state. In comparison to several other states, Colorado’s Medicaid coverage for HCV Direct Acting Agents (DAAs) is one of the most comprehensive coverage models in the nation, and the amazing work being done by the state’s AIDS Drug Assistance Program (ADAP) is beyond reproach.

On the ADAP side of the equation, the program was one of the first in the nation to offer coverage for their co-infected patients through one of their five payer formularies – Standard ADAP Formulary (for the uninsured), HIV Medication Assistance Program (HMAP), Bridging the Gap Colorado (BTGC), HIV Insurance Assistance Program (HIAP), and Supplemental Wrap-Around Program (SWAP). For their uninsured clients, they consistently offer coverage up to the point where funds are no longer available for treatment, and have made significant strides toward including additional funds in their annual budget for treatment of HCV.

So, when I read that 90% of Coloradans diagnosed with HCV are not receiving treatment, I had to look a little bit further into the study. What troubles me is that the data is representative of the years 2013 and 2014, two of the most, if not the most we’re likely to see, volatile years for the HCV treatment landscape. Gilead Sciences and Janssen Pharmaceutical released Sovaldi and Olysio, two drugs that were meant to serve as companions in a new twelve-week regimen to treat HCV. Gilead’s product, alone, came out with an introductory Wholesale Acquisition Cost (WAC) of $87,000 for twelve weeks of treatment; when Olysio was factored in at around $45,000, treatment ostensibly could cost roughly $130,000 for just twelve weeks.

The sticker shock of Sovaldi, and later Harvoni (Gilead), was so great that there were Congressional hearing on the matter, wherein Medicaid, Medicare, Veterans Administration, and private insurers all balked at the high costs associated with these drugs and sounded the klaxon that paying for these drugs to treat all their clients infected with HCV would bankrupt them all. And, honestly, they weren’t wrong. A lot of time and energy went into fighting against these high prices, finding ways to pay for treatment, and pushing for greater oversight and funding for the problem.

In just two years’ time, the standard of care for HCV was essentially rewritten to the point where the old treatments were essentially dismissed by the medical community for being too difficult to tolerate and too costly to keep repeating literally ad nauseam. Then, in 2015, the treatment landscape started to turn around, with more private insurers and public payers’ coverage practices coming under scrutiny. At the end of 2015, the Centers for Medicare and Medicaid Services (CMS) released very specific guidance instructing state Medicaid agencies to stop rationing care, as the were in violation of very clearly stated statutes that required them to cover the drugs for patients. Some states – Arizona for example – specifically stated that they would not be in compliance.

But, I wonder if, had CIVHC had access to and reported numbers for 2015, we might have seen a different report. That is not to discredit the hard work put into the project by the CIVHC or its researchers, but the circumstances are changing, and more rapidly than those numbers imply. By looking at two of the most tumultuous years in HCV treatment history, of course the data they found showed 90% of Coloradans not receiving treatment – everyone was still trying to figure out how to pay for it and pricing agreements had not yet been reached. Hopefully, their next report on the subject will be less doom and gloom, and a bit more reflective of the current treatment landscape in Colorado.
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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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