Thursday, February 25, 2016

The Unaffordable No-Care Act: Why the ACA has outlived its usefulness

By: Sue Saltmarsh, Blogger

Despite the spin of the White House and most Democrats, when you look at the goals of the Patient Protection & Affordable Care Act (otherwise known as the Affordable Care Act, or ACA) compared to the realities people are facing every day, you will find that the ACA, or Obamacare as it’s called, has failed in all but a few of its original intentions. The reasons for this failure are many, but ignoring it on one side and squawking, “Repeal and replace!” on the other does nothing to address the truth. The ACA has failed because it wasn't enough; not brave enough to confront the greed of insurance companies, not visionary enough to change the way we approach healing in this country, and certainly not compassionate enough to actually help the people who needed it most. Bottom line – it “protects” profit, not people, and is only affordable for those who can already afford to pay.

President Obama signing the Affordable Care Act
Photo Source: The White House

There are five things the ACA has inarguably achieved:

The elimination of the onerous “pre-existing condition” clause
The end of lifetime caps on benefits
No more charging women more than men
Eliminating age-based discrimination
Enabling children to be included on their parents’ policy until age 26

It has also achieved:

The growth of insurance company profits
The decrease of access to care even among those who are insured
The increase of out-of-pocket costs
The increase of the number of people who are underinsured

The “why” of it
There are probably more reasons why we’ve come to this crisis in healthcare than any of us could know, but to me, it comes down to two things. First, then-Senator Obama made the mistake of leaving the authorship of healthcare policy to academics, think-tankers, and so-called economists with no input from the People or a variety of medical providers. I know this because the policy was already written when I accepted the invitation to serve on his campaign’s Healthcare Policy Committee thinking I could contribute to the creation of a single-payer system. Instead, it soon became clear that no input was welcome – our job was to sell what had already been written to the voting public.

Secondly, whether you approve of him or not, I believe that Barack Obama went into the “negotiations” of writing the legislation in a room filled with Republicans and healthcare industry hit men out for blood, when he na├»vely assumed that they were there in good faith, as he was. Instead, he had to settle for what he could get and he got no help from his own party or the voices of single-payer advocates, who weren’t even allowed in the room.

Couple that rocky start with the blatant obstructionism of racist Republicans and the ACA became a shell of what it was intended to be. The medical industrial complex got a pathway to more riches and the ability to justify mergers which are now creating monopolies the kind of which may bring Teddy Roosevelt back from the dead (not a bad idea for a new zombie-themed TV show!). And the People? We got royally screwed.

The true cost
Back in 2012, I went through the process of calculating the cost to me if my employer dropped our insurance and I was forced to go to the “marketplace” (doesn’t that sound quaintly friendly like you put on your gingham and sling your hand-woven basket over your arm and go to market?). As the insurance companies began to publish charts of what their plans would provide for what cost, there was nothing close to the $120 premium with a $500 deductible and, at that time, no co-insurance that I was paying with my employer-based Blue Cross Blue Shield insurance. OK, so what about a subsidy? My income was low enough to qualify for one, but as it turned out the $230-some I would get wouldn’t even put a dent in the $675 premium and $1500 deductible, higher co-pays, and co-insurance that left me holding the bag for 20% of everything. I resolved right then and there not to ever buy that kind of raw deal. And just let them try to pry that punitive fee for not having insurance out of my cold, dead hand.

Since that investigation, I’ve Iost my job, my incurable (except by a transplant) liver disease has progressed, and I’m now gratefully on Medicaid, which I guess I’m supposed to be ashamed of. But like single-payer, I’ve paid into the Medicare/Medicaid fund (1.75% of my wages) my entire working life and now that I need it, it’s there for me. I never have to pay a premium, never have to meet a deductible before insurance will pay a penny, never have to postpone an appointment or prescription refill because I don’t have the co-pay, and never have to spend hours on the phone fighting insurance company bureaucrats to get the bills paid. It has its downside – narrow networks and I’m limited to making $13,300 per year to keep it, but that gives me time to run my organization and help get Bernie elected so everyone can enjoy unfettered access to the same level of healthcare, no matter their economic reality.

The HIV/AIDS community and healthcare
Even before the ACA, the HIV/AIDS community was smart enough to demand a system whereby those in need could get the drugs they must have to survive – ADAP. But ADAP, like the ACA, is at the mercy of the appropriations process of Congress and as evidenced by Trump’s success, hatred and discrimination is trending on the Right and has always been behind the attempts to strip the ACA of anything that would cut into the profits of the insurance companies. If the Louie Gohmerts, Diane Blacks, and Ted Cruzes become the majority with Trump in the White House, imagine the potential harm to Ryan White, including ADAP.

Universal, single-payer healthcare would be publically funded, not victim to the appropriations process. And, life-saving as it’s been, ADAP will no longer be needed because every person living with HIV will get the care and drugs they need at no cost to them except the 2.2% (Bernie’s plan) or 3.75% (H.R. 676) most (making under $250,000) will pay out of their paycheck.

The dedicated activists who’ve watched over all things ADAP since its inception will be free to turn their commitment and skills toward the many other HIV-related issues that need strong, knowledgeable voices – transgender discrimination; prevention; training for both current providers in underserved areas and a new generation of HIV specialists; research involving women; job, housing, and employment discrimination; disability rights, etc., etc.

The ACA is a wolf in lamb’s clothing and unfortunately, the majority of the American public, including those living with HIV, don’t see past the costuming. It’s one of my deepest disappointments that HIV/AIDS community leaders have chosen to perpetuate the myth of the ACA as “the solution” or to parrot the defeatist cynicism of “It’s a nice idea, but it will never happen.” You are the people who showed us the impossible could happen, that unleashing the power of the united people could make big pharma and the FDA do what you wanted and move the government to not just acknowledge you, but legislate in your behalf. You proved that activism CAN work. So why would you not be in this fight?

As people who are getting sicker, even dying, people who have become bankrupt, even homeless, and those who have lost loved ones begin to coalesce around the injustice of the profit-driven system we have now, I hope the long-term survivors will guide a new generation of activists to ignite the spirit of ACT UP and join the rest of us in fueling the political revolution we’ll need to get this done. This country will never be lacking in wrongs to right and problems to solve, but it would be awesome to be able to check healthcare off the list.

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. 

Thursday, February 11, 2016

2016 National ADAP Monitoring Project Annual Report

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

On February 1st, an analysis of the AIDS Drug Assistance Programs (ADAPs) was released by the National Alliance of State & Territorial AIDS Directors (NASTAD). The 2016 National ADAP Monitoring Project Annual Report tracked state-by-state programmatic changes, emerging trends, and latest available data on the number of clients served, expenditures on prescription drugs, among other things. It is widely recognized by stakeholders has the most comprehensive analysis of ADAP-related information and data, and NASTAD's work provides an essential advocacy tool.

This year's report focuses on two main areas, including:
  • A Model for Optimizing HIV Outcomes Within an Evolving Health System
  • 3 Ways ADAP is Improving Health Outcomes 
Overall the 2016 National ADAP Monitoring Project Annual Report yielded some very compelling data on the success of the AIDS Drug Assistance Programs nationwide in 2015. Some key points are:
  • Over 139,000 clients were served, representing a 5% decrease overall from the previous year;[1]
  • The total ADAP drug expenditures were $130,921,720;[2]
  • Drug rebates accounted for $1.016 billion, or 45% of the overall ADAP budget, representing an increase of 6% from the previous year;[3]
  • ADAP remains the primary payer for those individuals whose insurance cost-sharing responsibilities (e.g., premium, deductible and co-payment/co-insurance) are a barrier to purchasing and maintaining insurance;[4]
  • A majority (72%) of all clients served by ADAPs were reported as virally suppressed, which represents a 12% increase over the previous year;[5] and 
  • A majority of ADAPs pay premiums (84%), deductibles (83%) and prescription co-payments/co-insurance (90%) on behalf of eligible clients.[6]
Accompany this year's report is an InfoGraphic, which NASTAD used to convey the important message behind how ADAPs are improving health outcomes. To download the Infographic, CLICK HERE.

The ADAP Advocacy Association commends NASTAD for its ongoing efforts to keep stakeholders informed, and engaged on the issues enumerated in this year's National ADAP Monitoring Project. To download a copy of the report, CLICK HERE.

[1] National Alliance of State & Territorial AIDS Directors, "2016 National ADAP Monitoring Project Annual Report," February 1, 2016, p. 3.
[2] National Alliance of State & Territorial AIDS Directors, "2016 National ADAP Monitoring Project Annual Report," February 1, 2016, p. 3.
[3] National Alliance of State & Territorial AIDS Directors, "2016 National ADAP Monitoring Project Annual Report," February 1, 2016, p. 4.
[4] National Alliance of State & Territorial AIDS Directors, "2016 National ADAP Monitoring Project Annual Report," February 1, 2016, p. 5.
[5] National Alliance of State & Territorial AIDS Directors, "2016 National ADAP Monitoring Project Annual Report," February 1, 2016, p. 3.

Thursday, February 4, 2016

New 340B Services Caucus Focuses on Patients

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

On January 28, 2016, something peculiar happened in the debate over the future of the 340B Drug Pricing Program. The ADAP Advocacy Association launched its new 340B Service Caucus, thus giving patients living with HIV/AIDS a seat at the table.

The Health Resources and Services Administration (HRSA) summarizes the program as follows:

"The 340B Drug Pricing Program requires drug manufacturers to provide outpatient drugs to eligible health care organizations/covered entities at significantly reduced prices. The 340B Program enables covered entities to stretch scarce Federal resources as far as possible, reaching more eligible patients and providing more comprehensive services. Eligible health care organizations/covered entities are defined in statute and include HRSA-supported health centers and look-alikes, Ryan White clinics and State AIDS Drug Assistance programs, Medicare/Medicaid Disproportionate Share Hospitals, children’s hospitals, and other safety net providers."[1]

Rx bottle with the label, "340B"
Photo by 18percentgrey on Getty Images

The 340B Drug Pricing Program has increasingly been discussed and scrutinized by lawmakers, regulators, payers, and trade associations. Throughout the debate, however, one important stakeholder group has been left out of the conversation: the patients! That is about to change.

In August 2015, HRSA issued proposed guidance on the program, and it included language important to "creating a defined link between a medically underserved, vulnerable patient and a 340B covered entity."[2] Leading up to the proposed guidance, HRSA had received feedback from many stakeholder groups.

The National Alliance of State & Territorial AIDS Directors (NASTAD) has been representing the concerns of the State AIDS Drug Assistance Programs (ADAPs); as they should be doing! The Pharmaceutical Research and Manufacturers of America (PhRMA) has been picking up the mantle of the biopharmaceutical research companies; as they should be doing! And the American Hospital Association (AHA) has been speaking up for safety-net hospitals; as they should be doing!

The ADAP Advocacy Association applauds the aforementioned advocacy efforts, but contends that the ongoing debate is further enhanced by adding yet another perspective. The caucus is designed to provide a neutral platform for stakeholders to discuss the program and related public policy initiatives, as well as the Continuum of Care for patients living with HIV/AIDS whom directly and indirectly received their care from Ryan White covered entities, ADAPs, and affiliated clinical providers.

To learn more about the 340B Drug Pricing Program, go to

[1] Health Resources and Services Administration, U.S. Department of Health & Human Resources, "340B Drug Pricing Program," 2016. Last accessed online at;
[2] AIRx Mail, "HRSA's Long-Awaited 340B Guidance: A Good First Step, But More to Be Done," September 2015. Last accessed online at;