3rd Annual National Monitoring Report on HIV/HCV Co-Infection Recap

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 Community Access National Network (CANN) hosted its 3rdAnnual National Monitoring Report on HIV/HCV Co-Infection on Wednesday, September 19th in Washington, DC, at PhRMA Headquarters. Presenters included Marcus  J. Hopkins (the author), Amanda Bowes (National Alliance of State and Territorial AIDS Directors – NASTAD), Jack Rollins (National Association of Medicaid Directors), and Ayesha Azam (Patient Access Network – PAN – Foundation).

HIV/HCV Co-Infection Watch

HIV/HCV Co-Infection Watch

I presented on the progress that’s been made in expanding access to Hepatitis C (HCV) Direct-Acting Antivirals (DAAs) in state Ryan White AIDS Drug Assistance Programs (ADAPs), Medicaid programs, and the Veterans Administration. In addition, I discussed some of the issues facing Harm Reduction measures (e.g. – Syringe Services Programs, Doctor Shopping laws, Prescriber Education requirements, et cetera), as well as CANN’s foray into Correctional Healthcare.

One key finding is that, as of September 2018, 39 state ADAP programs (most recently, Mississippi) have expanded their formularies to include coverage for HCV DAAs. By comparison, when the HIV/HCV Co-Infection Watch (CANN’s monthly report) began in January 2015, only 7 states offered expanded coverage. In addition, on the correctional healthcare front, there are currently at least 16 HCV-related lawsuits active in 14 states.

You can find my presentation at the following link:

Amanda Bowes, a Manager on NASTAD’s Health Care Access Team, presented on NASTAD’s work with Ryan White programs to expand access to treatment, as well as previewing a forthcoming PDF and web-based consultation tool – “Strategies to Increase Access to Hepatitis C (HCV) Treatment within ADAPs: Provider Decision Tree”– for providers to consult when determining how their patients living with HCV can pay for treatment.

In addition to this fantastic resource, Amanda also presented statistics about HIV/HCV Co-Infection within Ryan White programs. In calendar year 2016, over 1,000 (2%) across 15 ADAPs were reported as being co-infected with HCV at some point during the year. Of those, 336 (32%) of these clients received treatment for their HCV, and of those who were treated, 160 (48%) were reported as cured.

You can find Amanda’s presentation at the following link:

Jack Rollins, Senior Policy Analyst with the National Association of Medicaid Directors, presented on some of the opportunities to lower the costs of prescription drugs within state Medicaid programs. One of the most popular methods of controlling prescription in European markets is through the use Value-Based Purchasing (VBP), a concept that the U.S. has been loath to adopt in our traditional Fee-For-Service healthcare market.

The general idea behind “Value-Based Purchasing” (at least in nations with universal healthcare) is that purchasers – the buyer of the drugs prior to distributing them to patients – pay for drugs only when they prove “effective.” As that relates to HCV, the payor would only pay for the cost of the DAA if the patient achieves Sustained Virologic Response (SVR) – if the patient is cured of HCV.

VBP, as it’s currently being discussed in the U.S., looks much different. Currently, Oklahoma is the only state whose Medicaid program has an approved VBP, but the details of that are largely unavailable to the public due to existing trade secrets laws – a consistent sticking point with healthcare advocates that allows pharmaceutical companies and payors to “hide” the actual cost of medications.

Jack also mentioned two more states, Louisiana and Massachusetts, the latter of which recently had their VBP proposal denied by the Centers for Medicare and Medicaid Services (CMS). Massachusetts’s proposal was proposed to be limited in scope, proposing limited coverage for certain therapeutic drug classes with a robust exceptions process and would be tied to coverage decisions made by a Pharmacy Benefits Manager (PBM) and/or state employee benefits. Although this proposal was denied by CMS, several other states are interested in this idea.

Louisiana is looking at VBP policies specifically targeted at HCV DAA drugs, terming it the “Netflix for HCV.” Their idea would pool Medicaid and state Corrections populations under a model that would pay a flat amount to a drug manufacturer (say, Gilead) in exchange for unlimited access to their drug (say, Gilead’s Epclusa). Essentially, Louisiana would play a flat fee and be able to prescribe as much (or as little) of the drug as needed to treat patients and inmates with HCV.

You can find Jack’s presentation at the following link:

Ayesha Azam, Senior Director of Medical Affairs at the PAN Foundation, presented on the important of Co-Pay Assistance in underinsured populations. In defining who is considered “underinsured,” PAN goes by the following descriptors:

  • Individuals who spend more than 10% of their annual income on out-of-pocket medical expenses
  • Individuals who spend more than 5% of their annual income on deductibles
  • Individuals whose income is less than 200% of the Federal Poverty Level and medical expenses are greater than 5% of annual income
  • Seniors who do not have funds or who fall into the “donut hole” (where they have outspent their annual benefit, but have not reached the Medicare catastrophic coverage level)

So, using those descriptions, I’ll present my own information:

My health insurance through Highmark West Virginia BlueCross/BlueShield has a deductible of $4,000, which for me is around 12% of my annual income. My Out-of-Pocket Maximum is $5,000, around 15% of my annual income. With that in mind, let’s look at my Out-of-Pocket costs for the first quarter of 2018:

Doctor Visit Co-Pays (01/18 – 03/18): $246.34

Blood Work (single visit on 02/06/18): $1,785.00

HIV Meds (01/18 – 03/18): $768.00

Endoscopy (02/28/18): $278.68

Anesthesia (02/28/18): $440.50

TOTAL: $3,518.02

Add on a couple more months of the medications, and another volley of blood work in June, and I’ve hit both my deductible AND my out-of-pocket maximum before I’ve ever reached half-way through the year.

Using PAN’s definitions, I am critically underinsured; what’s worse is that the vast majority of plans made available through West Virginia’s health insurance marketplace are shifting further towards high deductible plans that tack on co-insurance after the deductible has been met (mine is 10% co-insurance), and I’m looking at spending nearly 1/3 of my annual income justfor my healthcare.

Without the West Virginia Ryan White Program, I would likely be so far underwater with medical bills (which I am), that I couldn’t even see to swim to the surface. Worse, still, is that, for HCV patients, there is noRyan White-type program to provide them with that level of financial assistance, leaving them to essentially fend for themselves.

This is where organizations like the PAN Foundation step in with Patient Assistance Programs (PAPs). In order to qualify for assistance with PAN, a client must be underinsured and make below 400%-500% (depending upon the fund-specific guidelines) of the Federal Poverty Level (FPL). PAN receives specific funding streams for individual conditions (e.g. – HIV, HCV, diabetes, arthritis, et cetera) and assist with the out-of-pocket costs associated with treatment. They will assist with Co-Pays, Travel to and from doctor appointments, and Insurance Premium payments.

The downside is that the demand for this assistance far outstrips the supply, and because each condition/disease has a specific funding stream, each fund has its own number of clients that can be helped before funds are exhausted. With most HCV drugs be shunted into Specialty Tiers, co-pays for each fill can be $250+ depending upon the insurance plan. To be clear – one member of the PAN Foundation stated, recently, that research indicates any co-pay over $50 to be “unreasonable.” Using that analysis, a single visit to my HIV doctor will set me back $60+, depending upon whether or not I’m assessed a clinic fee on top of my specialist co-pay.

This is where PAN Foundation (and other charitable assistance programs) are vital. Moreover, the vast majority of patients in the U.S. – already a low-healthcare-literacy nation – have no idea that these resources exist, which is a mixed blessing, for PAN: fewer patients knowing about the program means that funds will not be so quickly exhausted; the other side of that coin is that fewer patients will receive the critical financial assistance they need.

You can find Ayesha’s presentation at the following link:



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