Jesse Milan Jr., AIDS United president and CEO, represented the HIV community among a group of the nation’s leading LGBTQ community leaders at a roundtable meeting on June 14, 2023, with the U.S. Senate Democratic Steering and Outreach Committee. The purpose of this meeting was to discuss the challenges and legislative strategies that impact the rights of the LGBTQ community. More than 20 senators and four organizations attended the informal meeting, with AIDS United being the only HIV-specific group present.
Read his remarks below.
It is an honor to speak with you again.
Last year when we met, I was marking a personal milestone: my 40th year living with HIV. And the year before that, we commemorated the 40th year since the first AIDS cases were identified.
This year, we are marking the 40th anniversary of the Denver Principles. These principles are foundational to the HIV movement. The principles were written by the People With AIDS Caucus at the Second National AIDS Forum in 1983. On June 12 of that year, they stood up and declared that those of us living with HIV must be included at every level of decision making when it comes to our lives. Nothing for us without us. Nothing — from grant making, to medical research, to policy decisions — should be made about us without us being directly involved, in the room, at the table, at the helm! Those principles have ignited meaningful involvement of people with HIV and a national and global movement that continues through today.
And today you senators honor the Denver Principles by including HIV in your meeting with the LGBTQ community — LGBTQ health, wellness, well-being, human rights are infused within the HIV community. So, I represent over a million of us living with HIV who are grateful for your leadership. By inviting us here, you are making the Denver principles real at the highest level of government.
Having us in this conversation is about how we’re part of the bigger picture, but also how the bigger picture needs to focus on the health, wellness, well-being and human rights of people living with HIV.
As citizens who are part of the bigger national picture, HIV advocates and organizations are fully aware that our health and wellness is in the context of our national political environment, and with the recent debt ceiling issue, our national economic environment as well.
And though these are challenges, your leadership is essential for helping us overcome them so that we can finally end this epidemic, because every new infection takes not only a lifetime toll on the individual and their families, but a lifetime of medical costs as well. And every person who is not achieving an undetectable viral load is facing an enormous cost to our bodies, our well-being, and to our health care systems. Nearly 40% of us living with HIV are not reaching an undetectable viral load — where the amount of the virus is so low in your blood it’s not detectable in a lab test. When you have an undetectable viral load, you cannot transmit the virus to anyone else. This is known as U=U — undetectable equals untransmittable.
Undetectable also means your virus is so low that you are no longer at risk for developing and dying of AIDS. The LGBTQ community knows all too well the emotional cost to our people, and their families and friends when any one of us is developing and dying from AIDS. And we have 40 years of experience of the astronomical financial costs of caring for someone dying of AIDS. Neither cost is acceptable anymore.
With investments in prevention, treatment, and care and with political support for the policies we need, we can end this epidemic. We can save our communities and people much heartache, despair and cost. We can do it because we have the tools for preventing every new transmission and for helping people living with HIV have long, productive, and healthy lives. But those tools are not yet available to everyone who needs them.
That is why the Ryan White is still so important. It fills the gap for HIV-related health services that support and help save our lives. Full funding for the Ryan White program is crucial.
That is why we need to protect and expand Medicaid, which accounts for nearly a third of all federal spending on HIV. It’s a vital part of HIV treatment.
And that is why people like me who are aging with HIV need your support for us. I’m proud to say that I’ve reached the age where I’m staring Medicare in the eye. Soon, a majority of people living with HIV will also be Medicare age. But is Medicare ready for us? No. Does the Older Americans Act mention us? No, not yet, but with your help it should.
Both seniors and the newly diagnosed with HIV worry about where they will live and can they afford it. That’s why the HOPWA program continues being so important because housing is healthcare. But HOPWA continues having an enormous funding gap. Too many of our people are housing insecure, and we hope that you will address this.
But saving lives from ever having HIV in the first place is among the strategies that most need your support. We continue calling for a national PrEP program, like the one Biden first introduced in 2022. PrEP is one of the best prevention tools we have. We need your support for the $10 billion over the next 10 years as a mandatory program to ensure PrEP is available to all who need it every year until a vaccine for HIV is found.
And we need you to help to preserve the 340B program. It is an enormously significant source of revenue for community-based organizations to provide HIV testing, prevention and treatment.
The financial environment is important, but it is our challenging political environment that is fueling HIV to thrive. Because HIV is a disease of inequality. And so, we need you to pass laws that promote equality and combat stigma.
The wave of anti-LGBTQ+ legislation coming out of states is increasing HIV stigma and endangering our lives. That’s why we need you to pass the Equality Act.
HIV criminalization laws remain on the books in 30 states. They are a major source of stigma that discourage people from knowing their status and getting in care. The REPEAL HIV Discrimination Act would significantly help stamp out these antiquated laws.
The mpox outbreak in 2022 largely impacted people living with HIV. While the federal response was a bit bumpy at first, the response helped to quickly end that outbreak. But mpox hasn’t gone away, and more people need to get vaccinated. We need you to fund those projects.
Stigma around sex work needs to go too. Sex workers are vulnerable to HIV. The Safe Sex Workers Study Act would help to prove that.
And stigma around drug use still gets in the way of the lifesaving, HIV-preventing work of syringe services programs. Congress must end the ban on federal dollars for the purchase of syringes. We also need you to support Rep. Kuster’s STOP Fentanyl Overdoses Act.
So let me close by taking a lesson from your new book, Senator Klobuchar. The joy in my work in public service for HIV is about the lives I work to help lift up, and the lives I work to help save. People living with and vulnerable to HIV depend on your positions and your will to fight in these chambers to do the same. We need your continuing leadership to support the policies and funding needed to end the epidemic, and your leadership for building a more just and equitable nation where all people living with and vulnerable to HIV are healthy, well and thrive.
I am certain there will be great joy when that day comes.