Remarks to the 2012 Ryan White HIV/AIDS Program's All-Grantees Meeting

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By HRSA Administrator Mary K. Wakefield

November 27, 2012
Washington, D.C.

Good morning.  Let me just start by saying thanks to each of you for taking the time to attend this important conference. I know there are many demands on your time but this is an especially important meeting given the historic moment we find ourselves in.

As each of you knows, December 1 is World AIDS Day, when we commemorate the millions of lives lost around the world and re-dedicate ourselves to the fight to end AIDS.  The global theme, from now until 2015, is a bold and important challenge: “Getting to zero.”  Zero new HIV infections, zero discrimination, zero AIDS related deaths.

We can certainly take heart in the progress made thus far, with life-saving treatments and prevention efforts, but we don’t stop our commitment or our efforts until we get to zero.

Within the United States, our hope for getting to zero certainly involves you: the people witting in this room, and the community you represent.  For over 20 years now, the Ryan White community has been working to expand access to high quality health care. And now, we carry this work forward in the midst of a far-reaching, signature transformation of America’s health care system.

Across the nation we are working hard to increase access, improve quality, enhance efficiency and deliver on the promise of health care that we’ve all worked toward in this country.  And as Ryan White grantees, you play a strong, significant and continuing role in this rapidly evolving American health care environment.

From my vantage point as HRSA administrator, your work fully aligns with our mission: to strengthen and improve health care for so many individuals, families and communities.  And I say this because you provide top-quality primary medical care, essential pharmaceuticals, and vital support services to one of America’s most vulnerable populations.

I’d like to do three things this morning.  First, I’d like to reflect on some of the remarkable accomplishments to date of our collective partnerships through the Ryan White program.   Then, I’d like to address some of the challenges I know you all have confronted over the last year.  Finally, I’ll discuss what I know many of you are thinking a lot about: the interaction of the Ryan White program, the Affordable Care Act, and the Ryan White reauthorization.

First, I’d like to reflect on a few of the reasons that we can all take pride in this remarkable program, beginning with the simple but impactful fact that through the various Ryan White provisions, you deliver services to more than 500,000 people living with HIV/AIDS – about half the estimated total HIV/AIDS population in the United States.

In virtually every speech I give, a fair number throughout the year, when I talk about HRSA I don’t run through the 80 programs we operate; I focus on a very few.  And one of them is always this one, where I’m quick to point out the incredible reach that all of you collectively provide to people living with HIV and AIDS across this nation and how very proud HRSA is to support you in this work and to be your partner.

Your collective work through the Ryan White Program is so critically important because of the people whose lives you touch.

People living with HIV are, on average, poorer than the general population, and Ryan White HIV/AIDS Program clients are even less well off economically.  For these individuals, the Ryan White Program is an absolute lifeline because they are uninsured or have inadequate insurance and cannot cover the costs of care on their own, and because no other source of payment for services, public or private, is available.

And about 7 in 10 of the more than half a million people treated every year through Ryan White-supported programs are minorities.  About half of all Ryan White clients are African American, with another 20 percent who are Hispanic.

Your clients walk through your doors with remarkable needs and often obstacles in their lives that can seem insurmountable.  And yet time and again, you take them in.  Time and again, you go and seek them out.  You care for them, you care about them, and ultimately, you help to save lives.

Our support of you, in this work, comes through a myriad of Ryan White provisions. Let me share just a few highlights of each, beginning with Part A of the Ryan White program.

The Part A program funds 52 hard hit metropolitan areas across the country.  And over the coming year, we’ll begin working with a newly eligible jurisdiction, Columbus, Ohio.

Part A programs have been providing top quality care for many years, but they also continue to innovate. In coordination with the CDC and SAMHSA, 12 Ryan White Program Part A metropolitan areas participate in the “12 Cities Project.”  These 12 jurisdictions include nearly half of all persons living with AIDS in the United States.  The focus of this effort is to strengthen our work to coordinate and leverage the resources across other HHS HIV/AIDS programs.

In addition, HRSA launched Retention and Re-Engagement Projects in New York, Miami and San Juan, supported through the Minority AIDS Initiative, which is a part of the 12 Cities Project. This initiative addresses methods to re-engage people of color living with HIV/AIDS who have dropped out of care in these three metro areas.

These Part A jurisdictions will work with contracted HIV medical care providers to target personsof color with HIV who are no longer engaged in HIV care and who have co-morbidities of mental health and/or substance abuse issues and who may be homeless or unstably housed.

In terms of Part B and the AIDS Drug Assistance Program, the Administration has invested nearly $80 million in grants to help states eliminate their AIDS Drug Assistance Program waiting lists.

The grants are sharply focused on ensuring that low-income people living with HIV/AIDS are able to access care and better afford the medicines needed to suppress the virus.  This focus is critically important as research has clearly demonstrated that patients who test positive and enter treatment sooner are better able to achieve full viral suppression.

In July, HHS Secretary Sebelius announced plans to provide approximately $69 of the almost 80 million dollars to 25 states and territories through the Ryan White AIDS Drug Assistance Program.

The remaining $10 million, made possible by the Affordable Care Act, was distributed to Ryan White Part C community-based health clinics to expand access to medical and support services for 14,000 patients with HIV/AIDS.  These funds will also help states and communities pursue the goals, set by the national HIV/AIDS strategy, of increasing access to care and reducing HIV-related health disparities.

These awards, coupled with other federal investments, will provide people living with HIV/AIDS with access to pharmaceuticals.  This is particularly important to those individuals who have had difficulties getting medicines as states curtailed their programs.

On the third Ryan White program front, Part C, we’ve been working to expand this program’s impact.  Consistent with the President’s World’s AIDS Day commitment to expand medical care for people living with HIV/AIDS, new funding was announced in 2012 to support new Part C Early Intervention Services grantees.

These funds were distributed to areas where the epidemic is increasing, where demand for services has increased, and where other services are limited.  This past July, HRSA awarded $4.6 million to support 14 new Part C grantees in areas of the country determined to have the greatest need.  This is in addition to the $5.3 million awarded last May to increase support for 140 existing Part C grantees.  We also awarded $5.6 million through 134 dually funded health center grantees in May.

Our existing Part C investments support the provision of essential care across the country, and the purpose of this new funding was to expand that reach to provide HIV medical and psychosocial services to underserved communities.  These include newly diagnosed people living with HIV/AIDS who are not in care and individuals previously diagnosed but who have never been in care.  It also focuses on people who have dropped out of care and existing clients living with HIV/AIDS.

In terms of Part D, one of the ways the Ryan White Program changed this year was through the re-competition of the Ryan White Part D grant portfolio.  The re-competition has increased HIV related resources and access to HIV family-centered primary medical care, especially in the areas of the country with fewer HIV/AIDS providers.

We embarked on this re-competition after rigorous analysis of the Part D portfolio, during which we determined that the Program could do more to support filling the gaps in care that persist in other parts of the health care system, including Medicaid.

The limited reach of the program meant that we were not meeting the primary health care needs of uninsured and underinsured women, children, and youth.  The re-competition also considered the changing epidemiology of HIV across the country, helping to use these HIV-related resources to follow the epidemic as closely as possible in order to ensure that they are directed to populations most in need.

So now, applicants under the redesigned Part D funding stream more effectively provide comprehensive health care services for women, children and youth living with HIV/AIDS in the areas of greatest need for services.

I’d also like to take a minute and briefly mention three of the smaller but certainly important innovative investments we’ve been working on.

First, we are working on a Minority AIDS Initiative Funded Project entitled “Ask, Screen, and intervene.”  This effort incorporates HIV prevention for HIV-positive individuals at Ryan White clinics in four of the 12 cities with the highest HIV/AIDS burden.

Second, we’re funding a multi-site demonstration of HIV/AIDS service delivery project under the Ryan White Special Projects of National Significance Program.  The Enhancing Access to and Retention in Quality HIV/AIDS Care for Women of Color Initiative encompasses 11 sites and an Evaluation Center charged with fashioning models of innovative care to improve HIV care for women of color.

Third, our new Transgender Retention in Care Project supports organizations that are putting in place and evaluating interventions to improve timely entry, engagement, and retention in quality HIV care for transgender women of color.  There are nine demonstration sites and an Evaluation Center.

Well, these are some of our investments, but what makes these investments successful and impressive is that you and others are using these resources against a backdrop that often can be very challenging.  In many of your states, you have tightening budgets.  From us at HRSA, you have some changing administrative requirements.  And up ahead, we have a new health care environment with the ACA.

Given all of this, I want to acknowledge and express my appreciation for the flexibility and the patience of the many grantees in this room as we’ve made changes to our expectations here on the HRSA level.  Requirements around recertification, sub-grantee oversight and other new rules are often difficult to implement at first, and people can encounter bumps in the road.

I want to be clear though that these changes though are rooted in a commitment to having the strongest and most effective Ryan White program, one that works for people living with HIV/AIDS and also maximizes scarce resources.  That’s our aim.  And these changes are coupled with broader pressure on the budgets of all of the federal government, such that we’ve instituted changes that in fiscally healthier times we may not have.

Given the fiscal environment we’re operating in, now and going forward we’ll be working even harder to ensure we are leveraging our financial resources as efficiently and effectively as possible.  Some of the time, for example, we’ll harness information technologies to connect us together on a more regular ongoing basis, and by doing that we’ll work to push out materials and information in real time.

So our commitment to programmatic excellence doesn’t change, but at times, how we go about supporting it will.

Well, let me turn your attention to Ryan White and the ACA and the interaction between the two.  I know that many of you feel uncertainty about how the Ryan White program might change in the coming years in the context of the ACA.

And while much work still lies ahead for all of us, in its implementation the Affordable Care Act is, quite simply, an opportunity of a lifetime for people living with HIV/AIDS.  Improvements can be found across the board.  For example, with this law in place, people living with HIV/AIDS have the full benefit of health insurance coverage, including services such as inpatient care.

Starting in 2014 and in some cases earlier, many people with HIV/AIDS who are currently uninsured will be able to gain coverage, whether through Medicaid expansions or through private health plans offered in the Health Insurance Marketplace.

The law includes numerous important benefits for people living with HIV/AIDS.  Among them are the elimination of lifetime limits and annual caps from private insurers, as well ending discrimination based on pre-existing conditions.

However, I want to emphasize there are still important needs for the Ryan White Program.

As the ACA will have a major impact on care for your clients, HRSA has been intensively assessing the interaction between the ACA and the Ryan White Program.  We’re doing this in order to better understand and plan for how Ryan White client needs may be served, particularly beginning in 2014.

We are conducting this assessment within a public health framework.  We all know now that one of the most effective ways to control the HIV/AIDS epidemic is to maintain patients in medical care and on antiretroviral medications, as this greatly reduces the spread of the disease.

And, for example, many support services provided by the Ryan White Program have been important to ensuring that individuals remain in care.  As these services may not be consistently or adequately covered through ACA coverage expansions, the Ryan White Program will continue to play a vital role in decreasing HIV/AIDS mortality rates and reducing disease transmission.

HRSA is working hard to do everything we can to insure a smooth transition for all of the populations HRSA serves as the ACA is implemented.  We are working closely with CMS on ACA regulations being released and determining their implications for the Ryan White Program. And we are engaged in ongoing conversations with other parts of HHS, including the Office of the Assistant Secretary for Health as well as the Director of National AIDS Policy at the White House.

We are also sharply focused on learning from experiences in states that have begun health insurance expansions early, particularly California, Massachusetts and Colorado.  We know that ensuring continuity of care, access to providers with experience treating people living with HIV/AIDS, and finding the resources to enroll Ryan White clients are areas that require attention.

But, we also have learned from Massachusetts that when insurance expansions through Medicaid and the private market provided people living with HIV/AIDS greater access to care, Ryan White dollars can be redirected to increase support services that helped keep patients on treatment regimens.  And this opportunity has had significant consequences because in recent years, the state of Massachusetts has seen substantial decreases in new HIV diagnoses and AIDS mortality.  That’s an incredibly important outcome to evaluate and to learn from.

Well, moving forward, HRSA will remain the staunchest of the many advocates who appreciate the work you do.

Quite simply, the Ryan White Program and its providers represent a premier standard of care and support services for people living with HIV/AIDS, and at HRSA, we’ll do everything we can to ensure that Ryan White clients experience consistent, quality care, even as transitions into new coverage plans under the ACA are under way.

We know there will be support services currently received by many Ryan White clients that Medicaid expansion plans and private insurers may not cover.  In these instances, it will be vital for Ryan White to wrap around those key services.

As we move closer to full implementation of the ACA, HRSA will issue policy guidance and post questions and answers on our website to facilitate transition processes and provide you with valuable information resources that you can deliver to your clients.

While we’ve already engaged in a number of conversations with stakeholders throughout this calendar year, we’ll continue that engagement going forward.  And, even as we continue to seek out your opinions and your expertise, we’ll provide you with information as it’s developed.  Bottom line, we are committed to helping to make the transition as seamless as possible.

In the meantime, grantees can learn what is being planned in your state in terms of possible Medicaid expansions.  Moreover, to the extent those decisions are still being made, you can share information about the populations you serve to inform those local conversations.

You can develop contracts with those plans that are to be offered in your state’s marketplace and, where your states have them, with Medicaid managed care plans, so that providers are participating with plans when they “go live” in January of 2014.  You should also start thinking about strategies that can be used for enrolling clients in the Marketplace or Medicaid expansions.  Enrollment will be starting in October 2013, less than one year from now.

At the same time, there are several things than HIV/AIDS care providers and their teams can do to get ahead.  Here are a few recommendations:

Providers should begin planning to screen clients who may be newly eligible for Medicaid or other coverage available in your state.  You can learn which wrap-around services may be needed most in your state, based on coverage offered in health exchange plans and Medicaid.

Providers can work with patients to compare services covered under the Ryan White Program and individual State Medicaid programs and become familiar with the required essential health benefits for private insurance plans in individual states.

You can also visit www.healthcare.gov to familiarize yourself with the ACA.  Here you, and the patients you serve, will find key features of the law, a timeline for when these elements will be implemented, and fact sheets specific to populations, including women, young adults and people with disabilities.  This is an incredibly important website.

Finally, I want to take a moment to bring you up to date on the process of re-authorizing the Ryan White Program.

As you know, this past summer, HRSA launched a broad outreach effort and solicitation of feedback on reauthorization of Ryan White legislation and the program’s future.

We asked stakeholders in the HIV/AIDS community, including Ryan White grantees, clients, families, advocacy organizations and others to share their thoughts and concerns about Ryan White reauthorization, especially within the context of the ACA.

We did this because we want to ensure a transparent reauthorization process and we know how critically important it is to have input from those in the field who know the program best.  For example, HRSA received 227 emails via our Regulations.gov web portal created specifically for reauthorization feedback, and 149 emails during four live interactive regional listening sessions.

As you know, it’s a complicated interplay between the ACA, Ryan White and reauthorization of the legislation.  Please know how vital your feedback is: we’re using it to inform our work on the ACA moving forward and to develop policy options for reauthorization of the program.

Well, I’ve covered a lot of ground here today, and I’d like to end by looking ahead as partners – HRSA, you, your clients, and others with an interest and commitment to the population we collectively serve.  We really do have a lot to look forward to, even as we navigate this new era of care.

The Ryan White Program has certainly proven its success, as a payer of last resort, to help people living with HIV/AIDS who are low-income, uninsured or underinsured gain access to quality, effective HIV/AIDS care.  The program has helped thousands of individuals to find care and be retained in care.  You have demonstrated incredibly important and often life-saving commitment to people living with HIV and AIDS across a span of over two decades.

With that strong foundation to build on, the coming years will bring more opportunities that we’ll work to leverage.  And, for our part, absolutely essential to leveraging effectively is to ensure that HRSA’s door is open, that we’ll listen and we’ll learn from you and with you.  And that we’ll seek out every opportunity we can in service to the population that by law we’re called to support.

If you have a question, a concern, a thought, I want you to pick up the phone and call us.  Or send your Project Officer an email.  Let us know how we can help you, how we can get better at what we do, and how we can all maximize what I really believe is this once in a lifetime opportunity to make life better for people living with HIV/AIDS.

Going forward, there will be many questions, many new decisions, and many changes that we’ll work through together.  In the process we’re determined to provide the best service to you, so that you can provide the best service to the people that need it most. If we’re not doing that, then we need to hear about it.

And with the advent of “Ryan White 2.0,” the importance of the services you deliver will remain critical.  You’ll continue to make a profound difference in the lives of people living with HIV/AIDS and we’ll continue to look forward to being your partner in this incredibly important work.

Thank you.