68,000 Patients Obtained ACA Insurance Coverage, Thanks to ADAP

By: Brandon M. Macsata, CEO, ADAP Advocacy Association, and Marcus J. Hopkins, Project Director, HIV/HCV Co-Infection Watch, Community Access National Network

“ADAPs remain at the forefront of adapting HIV care and treatment services to an evolving public health landscape. Supporting clients in public and private insurance coverage under the ACA is a tremendous opportunity to improve the overall health of clients and maximize Ryan White Program resources. These figures represent a huge success for ACA enrollment and implementation, demonstrating the ability of our ADAP and Ryan White Program system of care to transition vulnerable populations to new insurance coverage and keep them engaged in the health system in order to achieve healthy outcomes and ultimately prevent new infections,” summarized the National Alliance of State & Territorial AIDS Directors' (NASTAD) Executive Director, Murray Penner, upon releasing some important findings on July 24, 2015.[1]

Penner's statement was in response to the AIDS Drug Assistance Programs (ADAPs) assisting 68,000 clients living with HIV/AIDS being served by the program gain access to health insurance coverage under the Affordable Care Act (ACA). That figure included 48,000 patients enrolled in a Qualified Health Plan (QHP), funded by ADAP, and an additional 20,000 patients transitioned to Medicaid.[2]

Source: NASTAD [3]

To download the NASTAD Fact Sheet, "ADAP SUPPORTS EXPANDED ACCESS TO CARE," click here.

Clearly, ADAPs remain a vital safety net for thousands of people living with HIV/AIDS nationwide, and that fact is unlikely to change into the foreseeable future. Despite robust ADAP programs, and overall increased access to care under the ACA (as demonstrated by this latest news), systemic challenges remain for patients living with HIV/AIDS. Among them, waiting lists and other cost containment measures persist; not to mention new challenges such as marketplace discrimination and roadblocks to the ACA's full implementation.

With the uneven rollout of the ACA's Medicaid expansion, particularly in southern states controlled by Republican governors and/or Republican legislatures, many public health advocates have routinely expressed concern over the number of patients potentially falling through the cracks of the new law. This news has major implication for people living with HIV/AIDS, as well as people living with Viral Hepatitis.

ADAP, under Part B of the Ryan White CARE Act, is designed to be the “payer of last resort,” meaning that it should only be accessed if there are no other options available to HIV-infected clients. Since the Ryan White CARE Act’s inception in 1990, the definition of “last resort” has been continually updated to reflect current Wholesale Acquisition Costs (WACs) and Average Wholesale Prices (AWPs) of medications, primarily by adjusting the income threshold in relation the to the Federal Poverty Limit (FPL). This is expressed as a percentage of the FPL (e.g. 400% of FPL).

This creates an uneven landscape among the 59 ADAPs. While a client’s annual income may allow them to qualify for benefits in one state or territory, they may not be eligible for coverage in another state.

One significant challenge of the Ryan White CARE Act is that funds allocated for the program are prohibited by law from covering the costs of inpatient hospital care.[4] This means that, while prescription drugs and outpatient care (such as check ups and physician visits) are covered, any visits to hospitals, clinics, or physicians fall on the shoulders of the client. The lack of inpatient coverage means that Ryan White clients must have some form of supplemental coverage, as well, such as Medicaid, Medicare, or private insurance.

It has prompted many ADAPs (Colorado, Louisiana, and West Virginia, for example) to use their funds to help clients purchase and pay for primary health insurance coverage. Clients choose from a list of available health insurance providers, and Ryan White funds are used to pay the cost of premiums, deductibles, and/or co-payments for prescriptions and/or visits.

Whether or not these ADAPs will cover HCV drug therapies for clients whose primary insurance does not cover them varies from program to program, and is dependent upon available funds, at the time. Colorado, for example, may step in to provide coverage for HCV drug therapies if the primary insurer does not cover or rejects coverage for HCV drug therapies, but does so only with a Prior Authorization and if funds are available to do so.

It appears likely that more ADAP programs will move toward helping clients purchase and pay for primary insurance coverage over time, as it may serve as a cost-containment measure – it may be less expensive for ADAPs to pay for the cost of insurance and co-pays for clients, rather than paying directly for medications. While more programs may move over to this model that should not suggest that every state is considering doing so, at this time.


[1] National Alliance of State & Territorial AIDS Directors, "AIDS Drugs Assistance Program Supports 68,000 People Living with HIV in Gaining ACA Coverage," July 24, 2015.
[2] National Alliance of State & Territorial AIDS Directors, "AIDS Drugs Assistance Program Supports 68,000 People Living with HIV in Gaining ACA Coverage," July 24, 2015.
[3] National Alliance of State & Territorial AIDS Directors, "ADAP SUPPORTS EXPANDED ACCESS TO CARE," July 24, 2015.
[4] National HIV/AIDS Initiative at the O’Neill Institute for National and Global Health Law, Georgetown University Law Center, "HIV Policy Experts Offer Recommendations for Updating the Ryan White HIV/AIDS Program," June 26, 2015.

It’s All About The Money: How Mandatory Mail Order Pharmacy Puts The Lives of People Living With HIV and Hepatitis C At Risk

By: Michelle J. Sherman, RPh, FASCP, AAHIVP, MichRx Pharmacist Consulting Services, Inc.

Over the past couple of years health insurance companies have added HIV antiretroviral medications to their “Specialty Drug Lists.” This results in the drugs being placed on the highest copay tiers with the highest copay structure. In many cases, it is unaffordable for people living with HIV/AIDS. In addition, health insurers have forced clients to utilize mail order “Specialty Pharmacies” picked by the health insurance plan.

What is Specialty Drug?
In defining specialty drugs there are two main factors: cost and complexity. Using a cost-based approach, CMS [Centers for Medicare & Medicaid Services] categorizes a specialty drug as one with a minimum monthly cost of $600 with respect to the Medicare Part D drug benefit. Other organizations utilize a higher cost threshold for specialty classification that may be as much as double that of CMS. Complexity can encompass a number of factors and affect various groups, including patients, payers, manufacturers, and the pharmacy itself.[1]

About 25% of people infected with HIV/AIDS in United States are co-infected with Hepatitis C (HCV). Intravenous drug users (IDUs) are co-infected with HIV/HCV at rates between 50%-90%. Additionally, medications used to treat HCV are extremely expensive and are also classified as specialty drugs.[2]

Many of these mail order pharmacies are owned and operated by the insurance company themselves. There are so many conflicts of interest in this behavior you would think the FTC [Federal Trade Commission] would put a stop to it, but instead they seem to turn a blind eye and is encouraged. In recent weeks, we have seen major insurance company mergers. Aetna spent $37 billion to buy its rival Humana; Centene spent $6.3 billion to buy Health Net and Anthem is close to a $47 billion deal to buy Cigna.

As Robert Reich so eloquently put it “We’re rapidly on the way to having a handful of giant health insurers. The only difference between this outcome and a government-run single payer, such as Medicare for all, is that revenues will go into executive salaries, dividends, and advertising and marketing rather than into lower premiums and health care.”

The insurance companies dupe employers, CMS, ADAP’s [AIDS Drug Assistance Programs], State Medicaid’s and Insurance Exchanges when they are told that they will “get a better deal” and cost them less if they make their employees and members utilize mail order pharmacies instead of local community pharmacies. This is just not true. The interest for the insurance companies and their relationship with their specialty pharmacies is one thing…Making Money! When Cigna forced their members into mandatory mail-order, Cigna profits grew 29% in the 4th quarter of 2014. Cigna’s mail-order pharmacy revenues increased 23% from 2013 to 2014.

Furthermore, mail order pharmacies send out medication to patients without ever contacting the patients and providing care to see if the patient is even taking the medications. According to the National Community Pharmacists Association (NCPA), it results in billions of dollars of wasted medications that drain the healthcare system.

Photo Credit:
National Community Pharmacists Association (NCPA)

So how are these mail order mandates putting the lives of people living with HIV at risk?

Community HIV pharmacies have been providing excellent care to people living with HIV/AIDS for over 30 years, managing the patients' drug therapies to avoid potentially fatal drug-drug interactions. Pharmacists help clients with adherence, ensuring that clients take their medication every day so they do not develop resistance to HIV medications, and also provide education on an array of other issues critical for an HIV-positive client's quality of life and well being, such as linkage to other services within their community. Clients have forged relationships with their HIV pharmacists, whom they know, like and trust, and who have become crucial health care providers on the care teams of people living with HIV/AIDS.

Several lawsuits have been filed against these insurance companies for discriminating against people living with HIV/AIDS by forcing them into mail order pharmacies. Consumer Watchdog has been successful in settling lawsuits with Anthem Blue Cross and United Healthcare. At this time there are active lawsuits against Aetna and Cigna. Will CVS Caremark and Express Scripts be next? We can only hope so.

The HIV Continuum of Care shows that of the 86% of people diagnosed with HIV, only 40% are engaged in care; 37% are prescribed antiretroviral therapy and only 30% are virally suppressed.[3]  I believe that mail order pharmacies would never improve the number of people virally suppressed, in fact this practice could make the number of people virally suppressed even worse…and here is why:

• Choice. People living with HIV/AIDS are denied choice and are forced to abandon their local community HIV pharmacists that they have established relationships. 

• Discrimination. People living with HIV/AIDS (and HCV) are discriminated against. All the lawsuits that have been filed demonstrate this clearly.

• Privacy. These plans threaten patient privacy. Confidentiality is paramount for people living with HIV/AIDS. Receiving prescriptions via mail where they live or work often breaches patient confidentiality. 

• Sensitivity. This is a major issue and many people living with HIV/AIDS feel uncomfortable discussing their situation over the phone with people they do not know or understand them. It is usually very difficult to get in touch with the pharmacies. Clients call and are shuttled from person to person in the phone tree, causing further stress and there is no continuity of ever speaking to the same person. The responsibility is on the patient to contact the pharmacy not the other way around. People working the phones are usually not trained in the HIV Continuum of Care and are usually not sensitive to people living with HIV/AIDS and related issues. With some insurance companies their call centers are outsourced to other countries, where the callers have no idea how to deal with clients and solve their issues. One client was told by the mail-order pharmacy that they could not mail to a PO Box but could deliver it to his work or to a neighbor.

• Drug Interactions. Disjointed pharmacy services result in life threatening consequences. Mail order pharmacies are only interested in filling the “specialty” prescriptions for clients, and therefore only supply HIV antiretrovirals or HCV medications. They encourage clients to get the rest of their medications from their local pharmacies (the pharmacies they know, like and trust and have established relationships). This tactic is catastrophic and can result in major drug-drug interactions and negative clinical outcomes. The mail-order pharmacy has no idea (nor do they care) what other medications including over the counter medications, vitamins, supplements and even street drugs the client is using. As a pharmacist and healthcare provider this a major cause for concern and proof that the mail-order hype that they provide better care is just plain wrong. 

• Coordination. There is no coordination of care. The HIV Continuum of Care is not about filling and billing the medications, throwing it in the mail and hoping it arrives on time. People living with HIV/AIDS, as well as HCV, need coordination of care such as referrals to physicians, mental health providers, ASO’s, support groups, legal aid, community resources just to name a few; and their local trusted HIV pharmacist can provide this coordination of care….the mail order pharmacy cannot provide it.

• Timeliness. Prescriptions arriving late. Mail-order pharmacies are notorious for poor service and having prescriptions arrive late. Adherence is paramount with antiretroviral medications. We know that adherence must be 95% or better. When clients don’t receive their medications on time, the pharmacy is promoting non-adherence, which is completely unacceptable. In my experience, it happens more often than not, clients become even further stressed out and they reach out to their local HIV pharmacist….yes the one they have a relationship with, who they know, like and trust. The local pharmacy then has to try to solve the problem caused by the mail-order pharmacy.

• Billing. Mail order pharmacies do not bill ADAP. Many clients that are forced to use mail-order pharmacies also qualify for ADAP. In these cases ADAP will pay the copay for the antiretrovirals resulting in a zero copayment for the client. This is a critical part of HIV care, as copays can often be high and unaffordable to the client. Mail-order pharmacies don’t bill ADAP therefore clients are caught between a rock and a hard place. They are forced to use these pharmacies, which actually cost them more money, where using their local trusted HIV pharmacy would cost them nothing.

• Patient Assistance. Mail order pharmacies do not utilize manufacturer copay cards. For clients who don’t qualify for ADAP, manufacturer copay cards, which save clients huge out of pocket expenses every month. In many cases the copays are unaffordable. If clients could use their local HIV pharmacies, copay cards can be utilized costing the client very little and in most cases nothing.

• Stress. Stress related negative outcomes are common.[4] The resulting stress caused by the mail order pharmacy mandates on people living with HIV/AIDS is detrimental to the immune system and can further compromise the immune system.[5]   

From everything you have read in this article, you can clearly see that forcing people living with HIV/AIDS and/or HCV to use mail-order pharmacies can greatly compromise care and to the behemoth insurance companies it’s about one thing…..IT’S ALL ABOUT THE MONEY…..Do the lives really matter?

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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. 

[1] American Pharmacists Association: http://www.pharmacist.com/specialty-pharmacy-unique-and-growing-industry 
[2] CDC: http://www.cdc.gov/hepatitis/populations/hiv.htm
[3] HIV Continuum of Care: https://www.aids.gov/federal-resources/policies/care-continuum/
[4] Psychological Stress and the Human Immune System: A Meta-Analytic Study of 30 Years of Inquiry. Suzanne C. Segerstrom and Gregory E. Miller. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1361287/
[5] Chronic stress, glucocorticoid receptor resistance, inflammation, and disease risk. PNAS, April 2, 2012 DOI: 10.1073/pnas.1118355109

ACA Marketplace Insurance Plans: The Good, the Bad & the Ugly

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

The Patient Protection and Affordable Care Act (PPACA), or the Affordable Care Act (ACA) – also known as Obamacare – has provided a tremendous opportunity for people living with HIV/AIDS to better access linkages to care and treatment. The total number of uninsured Americans has dropped approximately 6 percent since the law's enactment[1], although it is unknown how many people living with HIV/AIDS are included in that number because specific data is hard to come by (surprise, surprise).

Anyone interested in diving into some of the available data might want to read the analysis prepared by John S Kiernan, whereby he compared the rates of the uninsured by State before and after Obamacare.[2] The data used to compile this report is courtesy of the Kaiser Family Foundation, the Centers for Medicare and Medicaid Services, the Department of Health and Human Services, and the U.S. Census Bureau.

Figure 1. Main Findings: Uninsured Rankings

Source: WalletHub

Unfortunately, not everything with Obamacare's implementation has gone according to plan because various unintended consequences have routinely emerged since 2013. Among them -- and probably one of the most disturbing -- is the practice by insurance carriers engaging in discriminatory practices against people living with HIV/AIDS, as well as other so-called "expensive" chronic conditions.

Source: Human Resource Solutions

One of the earliest such practices emerged in Louisiana (and North Dakota) by Blue Cross and Blue Shield of Louisiana, which we covered in our "Tarnished Blue" blog early last year. At issue: Blue Cross and Blue Shield of Louisiana rejected third party premium subsidies from the Ryan White program on behalf of its policyholders. Left unchecked, many people living with HIV/AIDS who earn too much to qualify for Medicaid but not enough to qualify for federal subsidies for insurance plans potentially could have fallen into a coverage gap.

However, advocates were quick to respond. Lambda Legal led the charge against Blue Cross and Blue Shield of Louisiana, charging: "The situation is urgent. Refusing federal funds that provide life-saving care to people living with HIV could potentially affect thousands of low-income Louisiana residents, and if BCBS does not recognize the error of its ways and reverse course, the only logical explanation for its conduct is discrimination. This strategy keeps people living with HIV off BCBS's insurance rolls, and smacks of the sordid legacy of years of insurance industry practices designed to deny coverage to those living with HIV."[3]

After clear guidance by the federal government, and favorable legal proceedings, Blue Cross and Blue Shield of Louisiana backed down and once again started accepting third-party premium subsidies. Patients, 1; insurers, 0.

However, it didn't take long for yet another coverage crisis to emerge. "Adverse selection" has increasingly been a thorn in the side of patients. Adverse selection is the practice whereby "insurers try to encourage healthier people to buy coverage by making it difficult or even impossible for individuals with pre-existing conditions to obtain coverage."[4] In all fairness, adverse selection existed well before Obamacare, and it will probably continue to exist (in manner or another) for a long time to come.

Earlier this year,  The AIDS Institute (TAI) and the National Health Law Program (NHeLP) filed a complaint with the federal government against several health plans in Florida, accusing them of engaging in discriminatory practices against people living with HIV-infection engaging in adverse selection. That complaint has already yielded positive results for patients, evidenced by Aetna (one of the companies named in the complaint) agreeing to reduce patient costs for HIV medications nationwide in the qualified health plan marketplace. Patients, 2; insurers, 0.

That battle continues today, unfortunately. TAI announced last month that Florida would be requiring insurance plans to limit patient cost-sharing for HIV therapies starting in 2016. In other words, according to TAI, excessive co-insurance would be deemed discriminatory (TAI, 06/12/15).

Summarized Carl Schmid, Deputy Executive Director for The AIDS Institute, about the announcement by the Florida Office of Insurance Regulation: “This is a major victory for people living with HIV who rely on medications to remain healthy. We thank the Florida Office of Insurance Regulation for recognizing that insurers charging excessive co-insurance is discrimination and harms people with HIV who cannot afford the cost of their medications.”

Patients, 3; insurers, 0.

[1] CNBC, "Health uninsured rate falls, yet again, under Obamacare," July 10, 2015. Accessed on 07/14/15 at http://www.cnbc.com/2015/07/10/health-uninsured-rate-falls-yet-again-under-obamacare.html.
[2] WalletHub, John S Kiernan, "Rates of Uninsured by State Before & After Obamacare," 2014. Accessed on 07/14/15 at http://wallethub.com/edu/rates-of-uninsured-by-state-before-after-obamacare/4800/.
[3] Lambda Legal, "Lambda Legal Files Administrative Complaint Challenging Louisiana BlueCross BlueShield Policy Targeting People with HIV," February 10, 2014. Accessed on 07/14/15 at http://www.lambdalegal.org/blog/20140209_administrative-complaint-louisiana-bluecross-blueshield.
[4] About Health, "What is Adverse Selection," June 19, 2014.

HIV Policy Experts Offer Recommendations for Updating the Ryan White HIV/AIDS Program

By: Jeffrey S. Crowley, program director of the National HIV/AIDS Initiative at the O’Neill Institute for National and Global Health Law at Georgetown University Law Center

The O’Neill Institute for National & Global Health Law, along with other leading HIV/AIDS experts, have issued recommendations for ensuring that the Ryan White HIV/AIDS Program is updated to be maximally effective in a changing health care environment. The series of three policy briefs (http://bit.ly/ryanwhitepolicyproject) are designed to help the Obama Administration and Congressional leaders conceptualize structural changes to the program, and also to help HIV community stakeholders identify opportunities for improving engagement in care by adapting the critical program.

The Ryan White HIV/AIDS Program, enacted by Congress in 1990 and most recently reauthorized on a bipartisan basis in 2009, is a federally funded program that provides lifesaving HIV treatment and critical health services to uninsured and underinsured people living with HIV in the United States. Administered by the Health Resources and Services Administration in the U.S. Department of Health and Human Services, the program supports an estimated 536,000 people with HIV each year. The program was funded at $2.32 billion in fiscal year 2014.

Source: White House Photo

The Ryan White program is the glue that holds together the disparate parts of the HIV care response in the United States. A common question is whether this care and treatment program is still needed now that access to insurance has been expanded, and the resounding response is: yes.

This is a time of perhaps unprecedented opportunity to increase engagement in care in a way that better supports all people with HIV in the U.S. to access treatment and achieve effective suppression of the HIV virus. By doing so, it keeps people healthy and also reduces HIV transmission. Congress is expected to consider the program’s reauthorization and future direction in the coming years.

Research shows that insurance coverage matters, but, in 2010, more than 70 percent of Ryan White Program clients had Medicaid, Medicare or private insurance. They needed support from the Ryan White program because of financial gaps and inadequate coverage for case management, transportation and other critical services to help keep people with HIV engaged in care.

The reports, the first of three for the ongoing Ryan White Policy Project at the O’Neill Institute, addressed three critical topics:

• Aligning the Ryan White HIV/AIDS Program with Insurance Coverage

 Originally built as a standalone system, the Ryan White program has evolved to a complement to the insurance system. Nonetheless, as the health system seeks to better integrate services and design more effective and efficient care delivery models, this report offers strategies for better aligning the Ryan White program with insurance to ensure that people with HIV do not get left behind.

• Refining Ryan White HIV/AIDS Program Administrative Activities to Increase Population-Level Impact

The Ryan White program has always looked and acted differently than other parts of the health system.  This report provides recommendations for ways to streamline existing planning and monitoring activities to retain critical aspects of community engagement. It also forcefully calls for increased Ryan White program investments to build health department data management systems and capacity to better partner with Medicaid, Medicare, health plans, and HIV prevention programs to monitor engagement in care and intervene when care is interrupted.

• Bolstering the HIV Clinical and Non-Clinical Workforce

Generations of dedicated HIV care providers and community partners have built today’s HIV care system. While more must be done to better reach underserved populations and communities, the need is great to bolster and sustain the existing HIV care workforce. This report offers recommendations for building upon recent changes to the AIDS Education and Training Center (AETC) program and other efforts to support clinical and non-clinical providers.

Editor's Note: These reports were informed by consultations with people living with HIV, HIV medical and non-medical providers, Ryan White grantees, and federal HIV policy and program staff. The Ryan White Policy Project is supported by funding from Gilead Sciences, Inc. The report was prepared by Jeff Crowley and Connie Garner. Crowley reports no recent personal financial interests related to the report. Garner is policy director for Foley Hoag representing Gilead Sciences.

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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.