What’s Ahead for HIV Providers with the Affordable Care Act, Ryan White and Medicaid

Given OAC’s role in helping Ohio communities navigate the journey and challenges ahead down the Road to 2014, I attended the American Academy of HIV Medicines (AAHIVM) policy forum which focused on “What’s Ahead for HIV Providers with the Affordable Care Act, Ryan White and Medicaid” on Saturday, July 21, 2012.  To watch video from the forum, click here.

AAHIVM is a professional organization that supports the HIV practitioner and promotes accessible, quality care for all Americans living with HIV disease. Their membership of HIV practitioners and credentialed HIV Specialists™ provide direct care to more than three-fourths of HIV patients in the US.This program offered an All-Star line-up of experts to engage in conversations around how HIV care providers will be affected by looming changes to the health care system.

The following experts led our dialogue for the afternoon providing insight into what the coming years hold for providers, their practices and their patients:

  • Dr. Deborah Parham Hopson, Associate Administrator for HIV/AIDS, HIV/AIDS Bureau, HRSA
  • Dr. Steve Cha, Medical Director, Medicaid and CHIP, CMS
  • Jeffrey Crowley, former Director of the White House Office of National AIDS Policy (ONAP)
  • Jennifer Kates, PhD, Vice President and Director of HIV Policy at the Kaiser Family Foundation
  • Amy Killelea, JD, Senior Manager, Health Care Access, National Alliance of State & Territorial AIDS Directors (NASTAD)
  • Courtney Mulhern-Pearson, Director of State and Local Affairs, San Francisco AIDS Foundation
  • Dr. Donna Sweet, Chair of the AAHIVM Board of Directors
  • Richard Sorian, former Assistant Secretary for Public Affairs to Secretary Sebelius at the Department of Health and Human Services will serve as moderator Program Take-Aways

As we look towards the expansion of the Medicaid program the way forward exists under three themes:

  1. Collaborations at the National Level.
  2. Collaborations at the Local Level.
  3. Understanding/ “unpacking” and Implementation of Reform.

Collaborations will be critical at a high level as well as when we begin to “unpack” the major reforms of the Affordable Care Act at the National level.

It is unknown still in Ohio the future of the Medicaid expansion, but we must begin to mobilize and effectively create a transition plan that examines the strengths and limitations of the ACA for People Living with HIV in our communities as the support and foundation of our arguments for full implementation.

Health and Human Services sent a formal letter to the governors of all states that remain undecided or opposed to the expansion of the Medicaid program requesting a dialogue about the impact of this reform on July, 10, 2012. At this time Ohio is still undecided about expansion and our governor has yet to comment on when this decision will be formally made in Ohio.

In the meantime, HRSA and the Centers for Medicaid Services (CMS) are working together at a high-level with the President’s Advisory Council on HIV/AIDS (PACHA) regarding what the future integration of Ryan White and the Affordable Care Act.

It will be important for Ohio in discussions around the ACA/Medicaid expansion to:

  1. Leverage Partnerships and Allies with focus on benefits of expansion (e.g. Hospitals / Docs / Hospital Associations).
  2. Conduct an Analysis of which providers are already accepting Medicaid.
  3. Post November elections assess the “true story” for the Road to 2014, which will be critical for those states still wavering on Medicaid expansion.
  4. Reauthorization of Ryan White as a saftey net, but additionally for the 1/3 of those that are still going to fall through the cracks of the ACA and/or those whom are undocumented and ineligible for the major reforms of the ACA.
  5. Conduct a savings analysis of cost-savings for People Living with HIV/AIDS in Ohio under full implementation.
  6. Ensure that the Essential Benefits Package in Ohio is descriptive enough to meet the Care and Treatment needs of people living with HIV/AIDS.
  7. Conduct an analysis of ACA transition and its impact on the Ryan White Budget in Ohio.


Suggestions for Ryan White Providers

  1. Begin planning to screen newly eligible under Medicaid NOW!
  2. Learn about the Ohio Exchange as it unfolds, where gaps exist and where wrap-around will be needed.
  3. Visit www.healthcare.gov and www.healthhivreform.org

In summary, We must mobilize around the full implementation of the ACA and stress the importance of the Ryan White program, because of the variation of the program from state to state and the crucial role it plays as the payer of last resort.

The Bridge from Reauthorization to the full roll out of ACA is not going to be a smooth process, but rather a journey full of challenge and transition. There is a common understanding that, “If you cannot do it right for People Living with HIV, you probably cannot do it right for a lot of people.” At this time it is still unknown what flexibility will exist for Ryan White as the payer of last resort during this time of transition.

We must be engaged, prepared, and informed to continue providing life-saving high-quality, competent HIV Care.


Tyler Andrew TerMeer, MS

Director, Ohio AIDS Coalition

A Division of AIDS Resource Center Ohio


By: Tyler Andrew TerMeer, MS

I had the opportunity and privledge to attend LIVING 2012, a pre-conference program of the 19th International AIDS Conference, on Thursday and Friday, July 19 – 20, 2012.

LIVING 2012 is the 13th International Conference of people living with HIV and an official pre-conference to the 19th International AIDS Conference AIDS 2012.The goal of LIVING 2012 is to guide and inform actions and programmes of people living with HIV networks and other stakeholders through an evidence-informed advocacy strategy developed by and for people living with HIV. One of the outcomes of this years program will be an updated Global Advocacy Agenda for people living with HIV.

LIVING 2012 Program Objectives
Review current and identify new priorities for and by people living with HIV through a consultative process.
Develop global advocacy strategies by and for people living with HIV.
Ensure the diverse voices of people living with HIV are highlighted at AIDS 2012 and incorporated into plans and implementation of future work.
Inform GNP+ and other people living with HIV networks with a set of action plans to implement the people living with HIV advocacy strategies.

Program Take-Aways

LIVING 2012 was broken down into both plenary sessions and breakout group discussions that allowed for the opporunity to “unpack” the issues, come to areas of agreement and identify key issues for discussion.

Three larger discussions emerged from the Summit:

1. Prevention, Treatment, Care and Support.
2. Human Rights.
3. Community Mobilization and Activism.

There was a resounding call to action which highlighted the need for people living with HIV/AIDS to be front and center within any response to addressing the HIV Epidemic. Noting that people living with HIV played an integral role in early mobilization and that we must provide that equal platform and role for people living with HIV/AIDS in today’s response.

There is additionally a need to empower new leaders in the epidemic to help shape agendas and influence change in a new era of HIV. We need to think thoughtfully about how we move from a now tokenized GIPA (Greater Involvement of People Living with AIDS) to a strategic and modernized Meaningful Involvement of People with AIDS, or MIPA.

We need to engage in dialogue about how we avoid losing HIV in the larger social justice movement, but rather position ourselves to address collectively the social determinants fueling the epidemic which will be necessary to bring an end to HIV in our lifetime.

Our work – is to do the work, and serve the community!

We must prevent silos when dealing with key populations and ensure that all populations are connected to each other and speak together as one solidified voice.

It is through these efforts that we mobilize, that we re-energize GIPA from paper to principle and into a modernized MIPA.

This is how we begin to end the epidemic and gain acceess to an AIDS Free Generation.

Tyler Andrew TerMeer, MS
Director, Ohio AIDS Coalition
A Division of AIDS Resource Center Ohio

The AIDS Memorial Quilt at the IAC – Day 3

As the Quilt unfolds…. Time and time again…

As an observer of the quilt you are quite possibly completely unaware of the tremendous collaborative effort it took for your experience to take place.  The NAMES Project operates with a small staff and relies heavily on the assistance of volunteers – especially at an event as large as the International AIDS Conference.  Arriving on the National Mall today that reality became completely evident – this being the first ‘weekday’ the quilt was on display in D.C. our volunteer assistance dropped by at least half.  Operating with a staff of only about twenty or so folks we had our work cut out for us to say the least. Despite the drop in assistance the team was able to get three fourths of the mall covered, the other quarter is currently under construction.

The bonds that seem to form between volunteers and staff alike were unspoken, but so very powerful.  Many times no one was speaking at all – we just pressed on in order to finish the task at hand.  We are all here for the same reason and it’s that passion that allows you to push through the tears and sweltering heat of the day.

Today at the first sign of rain we all sprang into action – protecting the quilt panels is of the upmost importance and our actions made that very evident to any onlookers. Following the NAMES Project procedures the mall was cleared in no time. First the panels were folded and carried to the side of the mall, closer to the dry storage and covered with plastic until The Quilt carts came to collect them.  Throughout the process the team effort withstood the test: folding, carrying, covering, loading and finally placing in dry storage – ensuring the panels would live to be viewed another day.

I feel very fortunate to have met several individuals who have been involved with the Quilt since 1988. The fact that so many people, young and old share the passion to carry this memorial on passing the torch from one generation to the next is unlike anything I have ever experienced.  There is an energy surrounding the Quilt and its followers that is unexplainable. You might be thinking, how could laying quilts on the ground and folding them back up at the end of the day be such an experience? – To that I say Its way more than that, it’s a direct tangible connection to so many we have lost to HIV/AIDS.

I encourage you to educate yourself on this, the largest living memorial of any kind in the entire world.Until the last panel is attached we will continue to move forward. www.aidsquilt.org

Bill Arnold – OAC, Program Manager


A Stitch In Time…

Since the Quilt’s inception, volunteers have been critical to its ongoing growth and care. More than nine thousand volunteers across the United States helped the traveling crew display The Quilt on its first national tour. At the 1996 display in Washington D.C., more than eight thousand volunteers were on hand to cover the National Mall with The Quilt between the Washington Monument and the U.S. Capitol. Even here, at the International AIDS Conference, volunteers help lay out The Quilt every morning and fold it up for safekeeping every night.

Quilt Fact: There are currently twenty-one NAMES Project chapters in the United States and more than forty international affiliates around the world, all run by volunteers.


The AIDS Memorial Quilt at the IAC – Day 2

The early morning grey skies coupled with a heavy haze left the AIDS Memorial Quilt volunteer staff feeling a bit shaky – Are we going to be able to display today?  As the official opening of the quilt began, there was a buzz about the crowd – the memories of our lost love ones were all around us. It became clear midway through the opening that the weather was in fact going to cooperate, and so we began the process of laying down the blocks. Little by little the blocks were laid down and slowly, the Mall began to fill up.

Laying down stitched together pieces of fabric, sounds simple right? Well not so much.  The truth is it takes a small army working together to complete the task at hand. The coordinated efforts of the NAMES Project staff is simply amazing, all together pieces of the quilt are being displayed in over 50 locations here in D.C. The fact that just about anywhere you go during the IAC, you see an extremely moving block. It’s the constant reminder that the panels provide – we have lost so many and enough is enough!

After I completed my shift with the quilt I made my way over to the Washington monument to take part in the AIDS 2012 events, including the human red ribbon and the march on Washington. The kick off for the march brought so many of us together – I was able to find 20+ Ohio advocates to share the experience with.  The Rev. Al Sharpton, journalist Tavis Smiley, Dr. Cornel West and former Atlanta Mayor Andrew Young were among those who urged President Obama and other elected officials to do more to combat the domestic epidemic.

We took to the streets and began the march on Washington – traveling right down Pennsylvania Ave. The atmosphere was surreal.  I believe I pinched myself a few times to ensure I wasn’t dreaming. The fact that the International AIDS Conference had returned to the United States after a 22 year hiatus and that I am a part of it is still hard to wrap my mind around.  Advocating for so many who are unable, and for those we have lost, is an overwhelming feeling that will energize me for years to come.



~Bill, OAC Program Manager

The AIDS Memorial Quilt at the IAC – Day 1

To say the AIDS Memorial Quilt volunteer staff had to improvise today would be a tremendous understatement. Battling the constant wind and rain made for a very interesting, soaking-wet day. As some of you may be aware, when the panels are on display it is of the upmost importance that they be in a safe, non-damaging environment. That being said you can imagine the urgency that kicked in as the blocks were being lifted off the ground and placed in dry storage. Luckily, a large portion of the displays are inside this week, so visitors to D.C. are still able to view panels uninterrupted regardless of the weather.

My area assignment kept me on the National Mall along with several other NAMES Project employees and volunteers, including Roddy Williams, the NAMES Project Director of Operations. It was simply amazing watching them lead the group in a direction that allowed us to make the best out of the day. Visitors coming to the mall in hopes of viewing their loved ones panel/block didn’t have to walk away without having that wish fulfilled.  Roddy and his team were able to locate the blocks in dry storage that were requested on site and were viewed under a dry tent –providing a very emotionally intimate experience.

Despite the inclement weather of the day, a Reading of the Names was still able to happen. For a few hours, volunteers were able to read names from the official NAMES Project list. I was fortunate enough to have the opportunity to join in on the readings and had the privilege of reading two names in particular J. Kevin Sullivan & Michael McDonald. They have slipped away from this world but never will they be forgotten – And it is events, such as this conference, that keep their fight and memory alive.

With a little luck on our side the rain will hold off tomorrow and the ground will be dry enough for the blocks to be laid out!!

Bill, OAC Program Manager


 The Inspiration behind the Quilt

In 1985, the initial idea for The AIDS Memorial Quilt came to Cleve Jones, one of the organizers of the annual candlelight march in memory of San Francisco Supervisor Harvey Milk and Mayor George Moscone, both assassinated in 1978. To honor also the more than one thousand San Franciscans lost to AIDS, Jones asked fellow marchers to inscribe the names of their departed friends and loved ones on the placecards they carried. For the first time, numbers became names. At the end of the march, Jones and other participants taped the placecards to the walls of the San Francisco Federal Building. It was this action-the creation of a wall of names and is graphic resemblance to a patchwork quilt-that inspired The AIDS Memorial Quilt and eventually led to the creation of The NAMES Project Foundation.

Quilt Fact: The NAMES Project Foundation was founded in San Francisco in 1987

Your bridge to the International AIDS Conference – OAC Staff Bloggers

Can’t make it to the International AIDS Conference? Don’t worry, we’ve got you covered, the Ohio AIDS Coalition’s Director Tyler TerMeer and Program Manager Bill Arnold will be blogging from Washington D.C. – information including PrEP, ACA and The NAMES Project just to name a few highlights.

This year, the International AIDS Conference (IAC) will be held in Washington, D.C. from July 22 to 27. While D.C. hosts many conferences, the return of the IAC to D.C. is a really big deal. In 2009, President Obama lifted the long-standing travel ban on HIV-positive individuals entering the United States, which paved the way for the IAC to return to the U.S. for the first time in more than 20 years.

The IAC is the leading global conference on HIV/AIDS, providing a forum for stakeholders to discuss where we are in the fight against AIDS, what we have learned, and where we’re going. The theme of the conference is Turning the Tide Together, emphasizing both the promising scientific developments in HIV treatment and prevention, and the need for a international commitment to change the course of the epidemic.1

OAC’s Program Manager Bill Arnold will be volunteering with the NAMES Project assisting with the unfolding and monitoring of the AIDS Memorial Quilt that will be on display July 21st – 25th. It is this daily experience that will allow Arnold to relay on the ground experiences via our blog and daily photographs.

Tyler TerMeer, the OAC Director, will be attending the Conference itself and will be sharing an immense amount of information via the blog. The workshops, seminars and other events TerMeer will take part in will provide multiple facets of HIV/AIDS updates and news.

We are very excited to be able to provide the day by day experience of the International Conference on our blog so that you may follow us and the conference on this extraordinary journey.




Obama’s 4 major ACA hurdles to go

By: Former Sen. Tom Daschle 

The Obama administration has cleared a transformational hurdle now that the Supreme Court has ruled the health care individual mandate constitutional. The mandate’s importance to meaningful insurance reform and expanded insurance coverage for millions of Americans can’t be overstated.

But beyond the substantive victory, there is a psychological one. This decision gave the Affordable Care Act greater legitimacy and political standing. It signals to health care stakeholders that their new, ACA-based business models could continue to progress.

Yet four major additional hurdles must still be overcome before President Barack Obama and his administration can consider themselves clear of danger. Like the legal hurdle, these too, if not successfully addressed, could substantially undermine the law’s future viability.

First is legislative. While the House Republicans have announced their intentions to vote to repeal health care reform on July 11, and while it will garner the necessary votes, there is no chance a repeal will be signed into law.

This vote has little to do with a legislative agenda and almost everything to do with the House Republicans’ political agenda. We are unlikely to see any legitimate Republican proposal to replace or modify “Obamacare” in the near future.

There is little likelihood that any consequential policy change will take effect for the remaining months of this Congress.

However, there is a significant legislative hurdle that the administration must engage carefully and smartly. This is the myriad array of budget challenges that the federal government must face between now and the end of the year — especially during the lame-duck session.

Congress is going to be under great pressure to reduce budgetary outlays. Health care reform is likely to be a target of choice for everyone on Capitol Hill — and everywhere else. Insurance subsidies, Medicare and Medicaid, funding for pilot projects and further implementation of the law will all be candidates for budgetary review.

Loss of adequate funding at this crucial juncture could seriously undermine our ability to move forward with many of the law’s cornerstone elements. Every one of the ACA’s timetables and goals is on the line, and all the stakeholders who helped craft health care reform must prepare accordingly.

The second hurdle is the administrative and regulatory creation that must be implemented. Perhaps no administration has faced such immense challenges in implementing such a transformational law under such adverse political and legislative circumstances. There are insurance, payment and delivery reform components, with intricate interrelationships.

The key word in addressing all this is “pragmatism.” It’s essential that those in charge don’t become the perfect enemy. While holding true to the spirit of the law, they will need to show maximum flexibility — especially given the tumultuous two years since it was passed.

Thus far, the administration has done just that on many fronts — including charting the direction of a basic insurance benefit structure; shaping and selecting new delivery models, like accountable care organizations; and defining meaningful use of information technology.

This approach is essential going forward. Setting too high a bar or too rigid a schedule for implementation of the wide array of new provisions could prove fatal.

The third hurdle is really 50 hurdles. This is the challenge of working with each state to move forward on full implementation of the law’s federal-state partnership requirements. Especially in creating the heart of this reform, the state insurance exchanges.

Some states, like Maryland, Connecticut and Vermont, will likely be a piece of cake. But others, like Florida, Texas and Wisconsin, will be a monumental challenge — given the ideological and temporal demands at play.

In addition, with the Supreme Court’s decision to eliminate the Medicaid stick — the threat of the loss of all funding if expansion of the program is not implemented — the only option left for the administration is the carrot. Which means guaranteeing full funding of the expansion through 2017, and nearly full funding thereafter.

A number of Republican governors have already announced that they will oppose the creation of an exchange or Medicaid expansion. Others have said they’re considering it.
The administration is going to have to determine what leverage it has to encourage states to participate. It must also decide what to do should states fail to comply or fail to meet minimum standards.

The law gives the secretary of Health and Human Services great authority and autonomy in making many of these decisions. It is understood, for example, that the federal government has the authority to create a federal exchange in states that elect not to do so. But time is already running out and pressure to delay full implementation of this regulatory infrastructure is increasing.

Working with the states — or in some cases without them — will be a hurdle of immense size and complexity. It will likely require a great deal of preparation, persistence and pragmatism from everyone, including key administration leadership and federal decision makers on the ground in every state. The law’s successful implementation now depends on it.

The final hurdle may be the biggest — the political aspect. The president must be reelected for the ACA to survive. Former Massachusetts Gov. Mitt Romney has pledged to repeal the law on his first day as president. If elected, while he cannot do this single-handedly, he can virtually stop its implementation with executive orders.

In addition, should the Republicans win control of the House and Senate, it is likely that a legislative repeal effort would be successful. Given that the law was passed using reconciliation rules in the Senate, only 51 votes would be needed for repeal.

So the health care law is now one hurdle down — with four big ones to go. Each threatens the law’s survival, just as the legal one did. Each must be addressed with great care and innovation. The essential need to go five for five sets a high bar.

But it is one that must be achieved.

Former Sen. Tom Daschle (D-S.D.) served as majority leader.

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First over-the-counter home use HIV test kit approved by FDA

On July 3, 2012, the U.S. Food and Drug Administration (FDA) approved the OraQuick In-Home HIV Test, the first over-the-counter, self-administered HIV test kit to detect the presence of antibodies to human immunodeficiency virus type 1 (HIV-1) and type 2 (HIV-2).  The test, made by OraSure Technologies Inc., has previously been available only to health-care professionals.

The OraQuick In-Home HIV Test will be sold in retail stores so people won’t have to go to a health facility to learn if they have the virus. It is designed to allow individuals to collect an oral fluid sample by swabbing the upper and lower gums inside of their mouths, then place that sample into a developer vial, and obtain test results within 20 to 40 minutes.

“Today’s FDA approval of a in-home-use HIV test kit helps facilitate the goals of the National HIV/ AIDS Strategy of reducing HIV incidence and provides another option for individuals to get tested, know their status, and be linked to medical care and treatment, when and if appropriate,” stated Tyler Andrew TerMeer, Director of the Ohio AIDS Coalition – a Division of AIDS Resource Center Ohio. “It is of concern however that the home test doesn’t appear to be as accurate as tests conducted by health professionals and that the cost of the test could in fact be a potential barrier while there are more accurate, free tests administered by trained professionals at locations throughout Ohio.”

One measure of the test’s accuracy in the home setting indicated it had a sensitivity rate of 92%. The test currently being utilized by health professionals has a sensitivity rate of 99.7%.  The FDA said this means there would be one false negative test result for every 12 tests taken in HIV-infected individuals. The FDA said one false positive result would be expected out of every 5,000 test results taken by uninfected individuals.

“A positive result with this test does not mean that an individual is positively infected with HIV, but rather that additional testing should be done in a medical setting to confirm the test result” stated Bill Hardy, President & CEO of AIDS Resource Center Ohio. “Similarly, a negative test result does not mean that an individual is without a doubt uninfected with HIV, particularly when exposure may have been within the window period of the previous three months.”

OraSure Technologies Inc., will have a consumer support center that is available via phone and will be open 24 hours a day, seven days a week. The center will be available to educate users about HIV/AIDS, the proper method for administering the test and guidance on what to do once results have been obtained.  Information about the consumer support center and contact information is included in the test kit.

ARC Ohio and the Ohio AIDS Coalition believe that the OraQuick In-Home HIV Test has the potential to identify large numbers of previously undiagnosed HIV infections, especially if used by those unlikely to use standard screening methods. It will remain more critical than ever that we develop a more coordinated response to the implementation of effective strategies that provide access to appropriate education, information and referral to all those testing for HIV.

For more information contact the Ohio AIDS Coalition at (800) 226-5554.