HHS Secretary Azar’s Remarks to the National Ryan White Conference on HIV Care and Treatment

Content From: HIV.govPublished: December 12, 201813 min read


Cross-posted from Health and Human Services

Today, more than ever, we need to combat HIV not just as a biomedical issue, but as a social challenge, too. No one suffering from a disease should ever be made to feel that it is a moral failing—but choosing to stigmatize those who suffer certainly is. We also know stigma can be an even greater challenge when it intersects with the historic marginalization of particular populations, including African-Americans, Latinos and gay men. To win the battle among marginalized populations, we recognize that we need to listen to these communities, to engage with them more deeply, and learn from their experiences.

As Prepared for Delivery

Thank you, Dr. [George] Sigounas, for that introduction. Good afternoon, everyone, and thank you so much for having me here today.

It is a true privilege to be here. Infectious diseases, and HIV specifically, have been an area of interest throughout my career in healthcare, including my time at HHS in the 2000s.

It is at the very core of HHS's mission to keep Americans safe from the kinds of infectious diseases, including HIV, that we know so well how to prevent and treat.

It is an area of top focus not just for me, but for my entire team: leaders like NIH's Francis Collins and Tony Fauci, as well as Dr. Sigounas from HRSA; Robert Redfield, our CDC director; Scott Gottlieb, our FDA commissioner; our Surgeon General Jerome Adams; and Adm. Brett Giroir, our assistant secretary for health.

From my first day at HHS under President Trump, the challenges of Americans living with HIV or at risk for the disease have been top of mind.

HIV has been and will be a priority for this administration, and I want to explain to you our view of the challenge today.

But first, we know the frontlines of the fight against HIV are not in Washington conference rooms. They are right where you work every day.

So I want to begin by saying a sincere thank you to all of you, for coming here to this conference, for gathering here to collaborate, and for your dedication to this challenge.

Thank you for your work as advocates, activists, caregivers and researchers. Thank you for what you do every day, and what many of you have done for decades, to confront the challenge of HIV in America.

The work you do through the Ryan White Program has been integral to our nation's response to HIV/AIDS. 

It all began with a courageous young boy from Kokomo, Indiana, who fought what was then a deadly, essentially untreatable virus, while facing some of the cruelest forms of discrimination from his neighbors and schoolmates.

Fortunately, Ryan White had the strength and support of his family, including his mother, Jeanne White-Ginder, who is here with us today. 

Thank you, Jeanne, for your courage. Thank you for the advocacy that you continue today for people living with HIV. You, like Ryan, are an inspiration to all of us.

So many of you gathered here today have known loved ones, friends and patients whose lives have been shortened or burdened by this disease.

But all of you can testify to hope, too. You see every day how we can break down barriers to treatment, battle stigma, and improve the care of Americans with HIV.

At a local level, the mission of the Ryan White program, and the clinics and programs it supports, is clear: connect Americans living with HIV to the treatment and support they need to live healthy, flourishing lives. Today, we have more tools, and more effective ones, for doing so than ever before.

I know that all of you are also working on a broader vision: to become a country where the spread of HIV has been effectively halted, because every American with HIV/AIDS is receiving treatment and every American at risk for HIV is engaged in the right, proven prevention strategy.

Delivering such a vision, however, is still a ways down the road.

Some of the numbers, in fact, are outright discouraging.

One in 2 Americans diagnosed with HIV has had the virus for at least three years before they're diagnosed; 1 in 4 people diagnosed has had the virus for at least seven years.

This is, in part, an issue of access to healthcare. But it isn't just that. Seven in 10 people diagnosed saw a healthcare provider during the 12 months before their diagnosis.

The breakdown in communication here can be stunning. I've heard from Dr. Fauci about patients coming into his clinic not just with HIV that took far too long to diagnose, but actually displaying the classic signs of advanced HIV disease, which their doctors had simply missed.

These facts are disturbing not just because they mean worse outcomes for Americans living with HIV, but also because we are not taking advantage of the opportunities we have now in treatment as prevention.

As all of you well know, clinical trials have shown clearly that treatment is prevention.

People living with HIV who take medicine every day as prescribed, keeping an undetectable viral load, have effectively no risk of sexually transmitting HIV to their HIV-negative partners.

Ryan White partners have made remarkable progress on treatment.

As you heard earlier today, as of 2017, 86 percent of Ryan White patients are now virally suppressed, an amazing achievement and a number that has steadily improved over the years.

This is not just improving the lives of hundreds of thousands of patients, but also slowing the spread of the virus.

We also have the highly effective tool of PrEP, where we have much room for improvement as well. Just 20 percent of Americans at risk for HIV are currently taking the drug. These treatment and prevention gaps are part of the reason why progress on reducing the spread of HIV infections has slowed somewhat.

While we have driven the incidence of HIV infections down dramatically since the early 1990s, new infections in recent years have remained at roughly the same level, around 40,000 infections per year.

With the tools we have today, we can do much better.

Determining the best way to take advantage of these tools and close these gaps will be the focus of updating the National HIV/AIDS Strategy for 2020. The new national strategy will be developed in conjunction with the National Viral Hepatitis Action Plan, which will also be updated in 2020.

As many of you know, this process has already begun, and it will include deep engagement with community leaders and those on the frontlines, which means all of you. The Ryan White program is a vital part of our response to the HIV epidemic—we want your input.

In fact, later today, here at the conference, my team from HHS will be hosting one of many listening sessions that will inform the development of the strategy, and I encourage you to attend.

Developing the 2020 strategy will also involve the input of the President's Advisory Council on HIV/AIDS, the first meeting of which has now been scheduled for March.

Today, I am pleased to announce to all of you that we have chosen two excellent chairs for the advisory council: Carl Schmid and John Wiesman.

Carl is deputy executive director of The AIDS Institute, and a longtime leader and activist on HIV issues.

John is the secretary of health for Washington state and past president of the Association of State and Territorial Health Officers. He has helped lead the End AIDS Washington campaign, which is a model program for making the best use of tools we have to defeat this epidemic.

One increasing challenge since the last HIV strategy is the growth of our country's opioid crisis.

The crisis has made injection drug use more common and helped to spread infectious diseases such as HIV and hepatitis.

Combating the opioid crisis has been one of this administration's highest priorities.

In this fight, we are fortunate to have the Ryan White Program, which can provide essential substance-use treatment and mental-health counseling for those who are living with HIV.

You can be assured we will continue to prioritize the opioid epidemic and pay special attention to how it interacts with HIV.

We also have other particular challenges that we need to address, where all of you have important contributions to make as well.

I want to discuss two issues in particular: One is the high price of the latest HIV treatments, and the other is the ongoing battle against stigma surrounding HIV.

As many of you know, one of the top priorities I have set out as HHS secretary is reducing the high price Americans pay for prescription drugs.

Most Americans end up straining to afford prescription drugs at some point in their lives, but high drug prices are a particular challenge for Americans struggling with a condition like HIV.

In fact, our drug-pricing system is set up quite poorly to protect Americans with high drug costs.

The high list prices that manufacturers set for drugs are often negotiated down, to produce large rebates. But the full value of these rebates is often not passed on to the patient, who generally pays coinsurance as a share of the ultra-high list price.

Instead of being passed onto the patient, these rebates are typically used to bring down premiums overall—spreading the savings from these discounts across the entire patient population, rather than helping the highest-cost patients.

Re-examining how this system burdens Americans with high drug costs, sometimes driving them to halt treatment or never begin it in the first place, is a top priority for this administration. Lower list prices and negotiations that pass discounts on to high-cost patients are a key piece of our work on drug prices.

At the same time, we are also taking steps to help Medicare plans negotiate more aggressive discounts from drug companies, including on HIV drugs.

I know there have been concerns within the HIV community surrounding our proposal to give Medicare Part D plans more power to negotiate these discounts within the protected classes, which include antiretrovirals.

I want to be clear about two things: First, we put forth our proposal because we want to expand patient access to antiretrovirals and other expensive drugs, by driving down prices. If, for instance, prior authorization requirements are getting in the way of take-up or adherence to HIV treatment, that would be of great concern to us.

Second, we are going to be highly deliberative about this process: Please come to us with your concerns about our drug-pricing proposals. We are eager to listen—you represent a vital patient voice.

We believe the strong patient protections in Part D will help everyone get access to the drugs that are right for them at a lower cost, but we want your input on how that should work.

We also believe there is a need for pro-patient reforms to the 340B drug discount program, which benefits Ryan White clinics, so I want to clarify our plans there as well.

We are strongly committed to the original intent of the 340B program, to offer vulnerable Americans the drugs they need at a discounted cost. There is no better example of the important role 340B can play than in the provision of discounted drugs to Ryan White clinics.

You serve vulnerable populations who need expensive drugs; this is the exact situation 340B was intended to address.

Our concerns about 340B are driven by the rapid expansion of the program, beyond the populations it was intended to help.

When a program is set up to aid specific, vulnerable populations, expanding it to less needy populations doesn't strengthen the program, it undermines it. Any 340B reforms we undertake will be solely focused on strengthening and targeting the program to the populations it was intended to serve.

The other challenge I want to address today is personally, painfully known to many of you: the stigma that still tragically surrounds HIV.

Much of the stigma comes from outdated, inaccurate ideas about the disease that date back to its early days.

Stigma can be a debilitating barrier, preventing someone living with HIV or at risk for HIV from receiving the healthcare, services and respect they need and deserve. Worse, it sometimes leads to internalized stigma, which can also prevent people from seeking out the tools we have to treat and prevent HIV.

Today, more than ever, we need to combat HIV not just as a biomedical issue, but as a social challenge, too.

No one suffering from a disease should ever be made to feel that it is a moral failing—but choosing to stigmatize those who suffer certainly is.

We also know stigma can be an even greater challenge when it intersects with the historic marginalization of particular populations, including African-Americans, Latinos and gay men.

To win the battle among marginalized populations, we recognize that we need to listen to these communities, to engage with them more deeply, and learn from their experiences.

All of you, with your experience on the frontlines and your personal knowledge of fighting HIV among marginalized populations, will be a key piece of such efforts.

The national challenges we face on HIV are great, but they are also amenable to a targeted approach.

Today, more than half of the new HIV infections in America occur in just 45 counties, plus the District of Columbia.

They are disproportionately concentrated in places where cultural barriers to treatment and prevention remain high, especially the South.

To address these challenges, we need a better understanding of how to close the treatment and prevention gaps I mentioned earlier.

That is why, today, I'm pleased to announce that the National Institute of Allergy and Infectious Diseases will soon make new supplemental funding available for research collaborations across the Southeast between public health departments, community organizations, and the Centers for AIDS Research that we already support. These Centers for AIDS Research, in cities like Washington, D.C.; Birmingham, Alabama; and Atlanta, Georgia, are embedded with community efforts and have played a key role in expanding our knowledge of the best use of the tools we have to fight HIV today.

The focus will be on improving the implementation of the tools we already have for HIV prevention and care: How, for instance, can we do a better job of ensuring that individuals receiving antiretrovirals from a Ryan White clinic are able to reliably connect their partners to a supply of PrEP?

Would it work better in rural areas to deliver ARVs or PrEP by mail, rather than in-person at a pharmacy, where the patient may not want the only pharmacist in their town to know the medication they're taking?

These are the kinds of questions that can help us develop a much more effective approach to tackling HIV in the places and communities where it remains a huge challenge.

Applications from the centers will be expected to leverage existing federal support, including Ryan White funds. The goal is to derive results quickly, within a year or two.

For those of you with a biomedical or social science background, you know that's pretty much light speed.

I want to make a final point about HHS's HIV/AIDS research agenda: We know that federal support for biomedical research has played a key role in the fight to make HIV a treatable condition.

Federal investment will be a vital piece of discovering a cure and a vaccine for HIV, and more progress is being made every day.

I am proud to lead HHS as a science- and evidence-based organization, and this administration believes strongly in the importance of HIV/AIDS research. It is and always will be a top priority for us.

We know we have no time to lose.

We have the opportunity, in the coming years, to make incredible progress in the fight against HIV.

In some communities that have taken a focused approach, like New York City and San Francisco, HIV infections have dropped considerably—to where each new infection can be tracked as an epidemiological matter.

With the tools we have today, we should feel that each new HIV infection is a public health failure.

Someday, however, in the not-too-distant future, we believe that we can begin treating it as a sentinel event—one where public health, social services and healthcare supports can be mobilized to understand how the virus is still spreading.

That vision is front of mind for this administration, and all of you in this room will be key players in making it a reality.

Keep up the incredible work you are doing—but please, work with us to think boldly about where we can go together.

We all know our country can defeat this epidemic. With your help, we may be able to do it much sooner than many realize.

Thank you for having me here today.