I Benefit from HIV Co-pay Assistance Programs; CMS Wants to Change That

By: Guy Anthony, President/CEO, Black, Gifted & Whole Foundation, and Board Member, ADAP Advocacy Association

I found myself both shocked and appalled when reviewing the latest Notice of Benefit and Payment Parameters (NBPP) for 2021 issued by the Centers for Medicare and Medicaid Services (CMS) recently. The proposed NBPP, which is released annually, attempts to exclude manufacturer coupons from being counted towards a patient's annual deductible on cost-sharing.

As someone that has been living with HIV for over a decade, and a direct beneficiary of the drug manufacturer co-pay assistance program, I have an intimate understanding of the far-reaching and potentially devastating effects this decision could have on those in the HIV and HCV community.

Photo Source: Sermo

How Many People Will Be Affected by the Changes?

Over one million people in the U.S. live with HIV and over three million live with chronic HCV. Those who have these conditions come from all walks of life. They're certainly not limited to the LGBTQIA+ community. However, those from disadvantaged backgrounds are much more likely to have the disease than those that hail from affluent socioeconomic backgrounds.

According to the Centers for Disease Control and Prevention (CDC), HIV prevalence in U.S. poverty areas matches those of countries designated as having a generalized HIV epidemic such as Burundi, Ethiopia, and Haiti. What's more, HIV prevalence rates in urban poverty areas are inversely related to annual household income – the lower the income, the higher the HIV prevalence rate.

In other words, the poorer you are, the more at risk you are of contracting the disease. Furthermore, due to the nature of chronic diseases such as HIV, those living with these conditions find it much harder to secure long-term work due to issues surrounding immunodeficiency. This is something I have experienced myself, and employment with HIV is not easy to maintain.

Since a great deal of HIV and HCV cases are found in lower-income households, these changes are going to have a dramatic impact on a considerable proportion of those one million-plus people living with the condition.

How Does Co-Pay Assistance Help Those with HIV?

As you know, those with chronic conditions such as HIV and HCV have had the financial burden of the disease reduced thanks to co-pay assistance programs provided by drug manufacturers in conjunction with additional support from the AIDS Drug Assistance Program (ADAP). Co-pay assistance ensures that financially-challenged individuals can receive the drugs they need to live with the disease.

Everyone living with HIV and HCV knows and appreciates how important these programs are to the community. I've long advocated as part of my awareness campaigns that co-pay assistance and ADAP are pretty much the reason why HIV is no longer a death sentence, since many patients can better "afford" to stay alive. But this move to exclude manufacturers coupons by the CMS is going to hit those who need financial relief the most.

What is the Likely Fallout from These Proposed Changes?

The most immediate ramification will come in the form of reduced medication adherence. Suddenly those that enjoyed financial relief will have to deal with the impact of high deductibles and high cost-sharing expenses. Most individuals living with HIV and HCV need to take at least two antiretroviral drugs every single day. It doesn't matter who you are; anyone can see that these changes will force some people to choose between money and medication. It makes me sick that we live in a country that people with chronic conditions such as HIV might not be able to get access to necessary drugs, as prescribed by their doctor, as a result of a lack of financial means.

I know of individuals who potentially face a situation of not being able to afford the medication they need to live a normal life. One of those people happens to be me. It seems that the constitutional right to life and liberty has been thrown out the window. I think this has a lot to do with the continued stigmatization of conditions such as HIV and HCV. I am no less of a person because I have HIV, no one chooses to have this disease, so why have the rights of individuals within this community being gradually eroded?

Photo Source: Novartis

Help Us to Creat Change!

The CMS proposal to exclude manufacturer coupons would have genuinely concerning effects on the affordability of many medications within the regimens of HIV and HCV patients, including myself. In many cases, those living with these diseases will have to bear the financial burden as a result. For some, that burden will be too much.

As is the case for a lot of situations in life, it's going to be those without sufficient means that are going to find themselves the most adversely affected.

We need your help to stop this becoming a reality. Please contact your member of Congress and ask them to help stop this from happening to our community.

References:

• Denning, MD, MPH, Paul, and Elizabeth DiNenno PhD (2019, December 11). Communities in Crisis: Is There a Generalized HIV Epidemic in Impoverished Urban Areas of the United States? Centers for Disease Control & Prevention. Retrieved online at https://www.cdc.gov/hiv/group/poverty.html.
• McManus, K. A., Engelhard, C. L., & Dillingham, R. (2013). Current challenges to the United states' AIDS drug assistance program and possible implications of the affordable care act. AIDS research and treatment, 2013, 350169. https://doi.org/10.1155/2013/350169

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

Rx Drug Coupon Concerns Pit Prices Against Patients

Guest Blog By: Marcus J. Hopkins, Blogger

Drug manufacturer coupons have increasingly become a popular method of reducing the price consumers pay for their medications. Insurers, Pharmacy Benefits Managers (PBMs), and other payors, however, argue that these cost saving tools actually drive prices upward and result in patients choosing expensive brand name drugs over less expensive generic alternatives, essentially costing the payors more money, in the long run. As a result, some payors are taking the extraordinary step of no longer counting drug coupons toward patients’ out-of-pocket costs and deductibles, meaning that once patients use a coupon, they’ll be left to pay the remaining cost of the drug out-of-pocket.

When looking at how and when these coupons are used, however, Health Affairs = a leading journal in health policy thought and research – found that just 21% of coupons used in the 200 highest expenditure drugs of 2014 had a direct generic substitute, while another 28% had an “imperfect substitute.” The remaining 51% of drug had either no generic substitute or only branded alternatives (Van Nuys et al., 2018).

For patients living with HIV (and, more recently, Hepatitis C), the past decade has been revolutionary in terms of the medications that have been made available to treat the disease. In 2007, most patients began treatment using a two- or three-pill regimen with various storage requirements. A year earlier, the first single-pill regimen, Atripla (Gilead), was approved by the FDA for the treatment of HIV.  In 2017, virtually patients begin HIV treatment with a single-pill regimen. The sad reality, however, is that there are no generic substitutes available in the United States for HIV drugs, and manufacturer coupons that reduce co-pays for them play a vital role in determining whether or not patients can afford the lifesaving medications they need.

“Consumers with life-threatening conditions are caught in the crossfire of an ongoing battle between insurers and drug companies over drug pricing. No matter who wins the battle, the casualties will be the patients, taxpayers, and the general public,” says Eddie Hamilton of the Columbus, Ohio-based ADAP Educational Initiative.

Photo Source: Consumer Reports

He is correct. In the rush to lower expenditures in the post-Affordable Care Act (ACA) market, insurers have increasingly begun weaponizing their drug formularies – the list of drugs payors will cover and for how much – against manufacturers to force lower pricing agreements, all of which are confidential under existing Trade Secrets laws. Placing brand name drugs in higher-cost tiers has been a relatively ineffective weapon when it comes to lowering overall prices, but has been an effective barrier to treatment for many patients living with HIV and other chronic illnesses for which there are few, if any, generic and/or effective alternatives.

This latest salvo against drug manufacturers will ultimately end up hurting consumers more than it will lower expenditures for insurers.

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.