Browsing Category: Access2Care

“The AIDS Community Must Band Together”

By Doug Wirth, Amida Care, NY, NY

Day 1 of AU’s Positive Charge Spring convening was filled with information/ideas for improving access and HIV care.

The health care reform session highlighted: 1) how private insurers restrict coverage due to pre-existing conditions and/or make it too costly; 2) how we’ve missed opportunities to engage people early, foster wellness and prevent new HIV infections due to a health care system (Medicaid/Medicare) that requires people to become sick/disable before care is made readily available; and 3) the reality that neither discretionary funding (Ryan White) nor the status quo (repeal ACA) will address the public health and care crisis of our time. Thankfully, facilitators Anne Donnelly (Project Inform) and Amy Killelea (Harvard Law School) lead PC/SIF grantees in a solution-focused, readiness review that frankly challenged all of us to get “in-action” at the State-level. ACT NOW to ensure State Exchanges plan for the needs of PLWH, ensure HIV providers are in managed care networks, and help design consumer education to minimize care interruptions and help PLWH navigate change. “Don’t wait to be invited in,” exclaimed Anne and Amy, “Get iLogo - Access to Caren there and make the cost-effectiveness argument” to State Legislatures and Exchange Boards. The session ended with a good dose of reality – nobody is going to save us. With Medicaid expansions on the horizon; consumers, providers and advocates need to engage in making Medicaid managed care work for PLWH.

Perhaps now more than ever, the AIDS community must band together to maximize resources for care and services to PLWH. This will require ongoing quality improvement to ensure funding for effective interventions and collaboration. It was fitting that the afternoon was spent discussing both. I’m struck by the dedication, wisdom and creativity of our PC/SIF colleagues from Massachusetts, Chicago, Los Angeles, San Diego, Durham (NC), San Francisco/Oakland, Louisiana, Montgomery (AL), St. Louis (MO), New York and Washington, DC.

Thanks AIDS United, BMS and Wal-Mart for helping lead the way!

A Fire in the House: HIV/AIDS in the Deep South

by Maura Riordan
Vice President, Access & Innovation

I’ve never blogged before. Having been active in the fight against HIV/AIDS for the past 25+ years, I’ve seen plenty of life that is unfair, unjust, and painful. I grew up in a sense, in the AIDS epidemic. I began this work when I was in my 20’s . . . when my gay male friends starting getting sick, and dying. I did not understand what was happening around me. As more people became sick, and quickly died during the early years of AIDS in the US, I did know one thing – I wanted to be able to tell my future children that I did something to help – that I did not stand by while human beings died without a loving hand to hold, without hope, without respect. I wanted them to know that while some reacted with bigotry and hatred, so many stepped forward with a sense of community and a remarkable human spirit.

Since those early days, I have stayed in the field of HIV/AIDS.  And in that time I have seen the epidemic change in so many ways. We have treatment options that make HIV/AIDS a chronic, manageable disease.   Not easy, but with access to care and treatment, manageable.  The populations most impacted have changed.  Or more accurately, and more sadly, expanded.   White, gay men were hit first (and continue to be), but now people of color living in poverty are the forefront of those disproportionately impacted. The African American community is at the epicenter of the epidemic, with a particularly devastating impact on men who have sex with men (MSM), and women.

Many of us who have worked in this field long-term have grown accustomed to fewer deaths and a system of care that was built as a result of activism, spurred by the stigma, homophobia, and lack of mediations that killed so many HIV-positive Americans in the beginning.  The creation of the Ryan White Care Act, the formalization of support services that grew out of grassroots efforts to care for the dying, and the availability of life-saving medications have all fundamentally changed what was once widely considered by much of the general public, a top tier public health crisis.

Don’t get me wrong – there have always been unmet needs and deep injustices toward people living with HIV/AIDS in the US, but it is fair to say that overall, things got better in the late 1990’s.

And then I went to Alabama. I went as part of a small delegation of private sector funders to see the impact of HIV on the region, and to learn more about the innovative responses to epidemic that our grantees and stakeholderse have developed with AIDS United support.

I have known for some time that the South is the home of disproportionate HIV infections, poverty, lack of access to care, stigma, and poor health outcomes.  Somehow though, in more than 25 years of working in HIV,  I had managed to miss a visit to Alabama. It is hard to put into words what this trip, and the people I met and listened to, has meant to me. I have come away with a renewed sense of urgency in my work, because what I have seen and heard is far too reminiscent of my early days in this fight. The fear that many people in the South living with HIV/AIDS have at the possibility of others finding out about there HIV status, is palpable. Disclosures  have resulted for many in the loss of employment, the severing of relationships by friends and family, and a spiral into substance use, deeper poverty and marginalization.

I was initially shocked at the difficulty we had finding HIV-positive Alabamians to talk with our group about living with HIV in the South, but it became abundantly clear that stigma and its dangerous ripple effects, are simply intolerable for people living with HIV in the South, in addition to dealing with poverty and racism.

HIV’s ravaging of the Deep South represents a fire in our collective house in the United States.  The HIV/AIDS epidemic there is comparable with many of the countries that we assist in our global response to it. This is unacceptable, and presents a pivotal opportunity for those among us who believe in righting historical wrongs. Our first evening on the Alabama trip began in the Civil Rights Memorial Center, in Montgomery, Alabama. Walking through this space, and seeing the powerful images of the historical fight against injustice, it was clear that the current day fight against HIV/AIDS stigma and resource deprivation in the South is part of the same march for human rights.

The HIV/AIDS epidemic in the South cannot be seen as an isolated reality, separate from the larger civil and human rights movement. Poverty, racism, and ignorance fuel the HIV/AIDS epidemic in South and beyond. If we have learned anything from those who went before us, those who put their lives on the line for justice and human rights, it is that change will not come easily. Do we sit by while an entire population of Americans living in the Deep South face an epidemic proportional to that in developing countries? Do we demand that federal resources be allocated in a way that is reflective of the Southern reality? Do we host an International AIDS Conference in Washington DC this July, and not acknowledge that there is a fire in our own home?

For the first time in years, I feel a fire in my belly. It is a message that I cannot ignore. Many years ago, I promised myself that I would be able to tell my children that I did the right thing.  So I joined the fight. I now know that the fight looks different.  And though it may not be the neighbor I know that is dying, it is still my neighbor, my community member, my fellow American. It is time to stop the complacency, to step out of the comfort zone we have settled into in the US – there is a fire in our house. Will you join the fight this time? Will you someday be able to tell your children, your nieces and nephews, your grandchildren, that you did something to stop injustice and inequality? It is time to step up, and right another wrong.  Let’s put this fire out.

Guest Blog: Make it Grow to Save My Life

Hydeia Broadbentby Hydeia Broadbent, HIV/AIDS activist

Who would believe in 2011 with so many advancements in the HIV/AIDS world we would still be at a place where people living with HIV/AIDS are getting the quality healthcare they deserve?

After a positive HIV test result many are told there is indeed hope and that HIV/AIDS is no longer the death sentence it once was. Then comes the
reality that yes, there is hope, but you might not have access to that hope, well unless you have the right access to the right care at the right time.

For those who may not know me I was born HIV positive, with full blown AIDS by the age of 3- that was in 1987. The late 80′s was very dark time for
people living with AIDS, people were dying at an alarming rate- there was no hope for you if you had AIDS. My parents were told I would not live pass
the age of 5. But thanks to clinical trials for new medications I am still alive 23 years later.

At a very young age, I saw countless friends lose their lives to AIDS despite fighting everyday to stay alive. We all put ourselves through hell for a
chance at hope. Hope for a better tomorrow, hope for life and we did this not just for ourselves but for others to have a better future living with
AIDS.

We have come a very long way, in 2011 AIDS truly does not have to be a death sentence; we are in a day and age when a woman living with AIDS can give
birth to a child of her own without passing HIV unto her unborn child. We are in a time where there is hope and a person living with AIDS can live a
long and fruitful life. However, that hopeful and fruitful life depends on your ability to access quality healthcare. Would you believe that in 2011,
for a variety of complicated reasons, some American people still haven’t accessed the physicians and mental health support professionals they need to help deal with their HIV-positive status?

I continue to deal with the scare of not knowing if there will come a time when I won’t have access to the care that I need. That is a scare I wish on
no one, the fear of not knowing. The fear of feeling like your county, our health system has somehow failed you, the horrible feeling that your
neighbor is too busy to pay attention to what is going on and showing they don’t care. The horrible feeling that no one hears your plea for help, the
plea to help you stay alive. No one should go to sleep worrying about not having access to quality healthcare they need to stay alive. If I said I
wasn’t stressed or haven’t cried because of a little fear and doubt, I would be lying.

But through it all, I’ve been able to pull myself together and get a grip. I became proactive, I stopped stressing and started researching on what to
do next. I found out so many others living with HIV/AIDS are facing the same reality I faced. As I talked with others dealing with my reality we all asked
the same question: Why have so many people not living with HIV/AIDS turned their backs on us? This is America, the land of the free, the home of the brave,
we fight for the fair treatment of so many others, civil rights and human rights, but when it comes to access for care for those living with HIV/AIDS
we have turned a blind eye.

So what you can do? There are many ways for you to get involved. Something as simple like calling your local U.S. Senators and U.S. Representatives to
increase funding for programs like Part D of the Ryan White Care Act or to support health care reform, which will help increase access to care for
people living with HIV/AIDS. Share how you are supporting the HIV/AIDS community through your own personal and professional networks and through social
media. Donate to programs like AIDS United’s Make it Grow campaign. Efforts like Make it Grow work to create a lasting and systemic change in
communities most affected by the AIDS epidemic. Improving health outcomes and strengthening local service systems is key to connecting people living
with HIV/AIDS to the lifesaving care they need.

I’m often amazed at how such simple acts can help save a life- they continue to save mine.

Championing Access to Care

We did it!  We met our Social Innovation Fund  (SIF) required match!

Truth be told, our funding partners and champions did it!  Twelve incredibly generous and committed corporations, foundations and individual investors ensured that we met our federal 1:1 match, and to date have committed more than $2.5 million dollars to AIDS United’s Access to Care (A2C) program, which is helping thousands of people living with HIV/AIDS receive the life-saving medical care and social support services they need and deserve.

I want to acknowledge the following visionaries for their commitment and dedication to improving the lives of those living with and at risk for HIV, and for their unwavering focus on ending the HIV/AIDS epidemic in America and indeed throughout the world.

  • Bristol Myers-Squibb
  • Broadway Cares/Equity Fights AIDS
  • Chevron
  • Elton John AIDS Foundation
  • Ford Foundation
  • Fred Eychaner
  • Gilead
  • Janssen
  • MAC AIDS Fund
  • Rogers Innovation Fund
  • ViiV Healthcare
  • Walgreen’s

Without these champions, AIDS United and our 10 amazing A2C grantees would not be able to deliver innovative programs that improve individual health outcomes and strengthen local services systems, connecting economically and socially marginalized individuals with HIV to high-quality, patient-centered health care.  For more information about SIF and the game-changing efforts of our A2C grantees, click here.

And now we need you to be our champion, so that we can take Access to Care to a higher level. By joining our investors and making a donation to AIDS United, you can make these initial investments grow – so that we can do more good.  Together we can create innovative, sustainable and scalable programs that improve the lives of people with HIV and that lead us to our ultimate goal – the end of the AIDS epidemic in America.

Thanks for the inspiration.

Mark

When History Meets Health: Lessons from National Native HIV/AIDS Awareness Day

In observance of National Native HIV/AIDS Awareness Day, Team Indy met with Doug Poe, Executive Director of American Indian Center of Indiana, to learn more about the impact of HIV on this population.

Although Native Americans make up .2% of the United States population, they constitute one percent of the total percent of people living with HIV. Given the growing importance and prevalence of HIV/AIDS in this community, it is crucial to understand how history, policy, and culture have shaped health outcomes of  Native Americans  and how those factors and will decide their future with disease.

The interactions between this population and the U.S. government over the past 300 years have had repercussions that affect Native American health even today. Displacement of populations, the types of food provided on reservations, and mass sterilization campaigns that occurred in the 1970’s are felt not only in individual health, but also in how modern health care is currently viewed and utilized by Native Americans. A poor understanding of cultural differences by health care workers may also create a barrier to care for this population. Increased understanding about herbal medicine, culturally-sensitive communication, and the complex system of access to and coverage of health care for Native Americans will be crucial if we are to effectively care for those with HIV.

Mr. Poe met all of the team’s questions with his wealth of knowledge about Native American history and culture. Our conversation with Mr. Poe highlighted the importance of historic events on modern issues. In future years, it will be important for AIDS service organizations, health care, and native populations to acknowledge and understand the implications of HIV. With strong and clear connections between these parties, we can bring attention to and control the impact of HIV/AIDS in Native American populations.

The Time is Now

by Will Rutland, Montgomery AIDS Outreach

It is a bittersweet thing to leave an environment so charged with hope in order to carry that hope into the world.  And yet, today, that is what we did: today we left the comforting confines of the Pere Marquette convening space. Today we began the task of translating our respective aspirations into action beyond the walls of our hotel meeting room, appropriately called “Storyville III.”

Fortunately, AIDS United sent us out well-armed.  In addition to the powerful programs and presentations given over the last few days (and let’s be fair, the St. Patty’s revelry down Rue Bourbon was a whimper in comparison to the thunderous message of  WORLD  founder Rebecca Denison’s moving film about her beloved HIV doctor), we concluded the convening with small group conversations focused on: evaluation, the peer model, and social networking.

After digging into our respective areas of interest, we reconvened in front of our able captains from AIDS United, Maura Riordan and Suzanne Kinsky, and continued a dialogue regarding how best to stay connected as we embark on our shared, separate adventures.  Having collectively determined that: (1) too many emails are bad for the soul, and (2) we really should more seriously consider a convening in Hawaii, the time had come to say goodbye.

For our Montgomery group, that means the time is *now* to begin the work of bringing crucial care to those outside the practical boundaries of the traditional model; the time is now to begin reaching the previously unreachable; the time is now to begin amplifying the impact of our efforts through technology.  The time is now to do more.

And so, with heartfelt hugs, vigorous handshakes, and one or two quickly-covered sniffles, we bid each other farewell – parting company a little more certain that after this hopeful (if trepidation-tinged) week, we can do this. Together, we can do this.

And so we begin . . .