Thursday, August 6, 2009

The Real Price We Pay

In the midst of a discussion about national healthcare reform, I remain stunned by the completely short-sighted, mind-numbing ignorance displayed in our recent public health cuts in California. As the details of what these funding cuts are going to mean in California become more evident, the phrase I hear most from public health experts is, “Stunningly stupid … heartless … and fiscally irresponsible.”

These cuts will increase disease and death rates. They will increase the risks to the general public. They will increase the costs of healthcare to the taxpayer. An unbelievable and devastating trifecta.

Again I sat in a meeting of the San Diego HIV Planning Council where 40 desperate consumers and healthcare providers -- who all volunteer to serve on the council -- struggled with their rage and tears as they began to try to balance a budget -- a budget that will contain the worst HIV cuts in a decade. These cuts were part of a larger slashing of public healthcare funds, including cuts to children’s healthcare, shelters that support victims of domestic violence, MediCal’s mental health programs and so much more. We are still sorting through the impact of the cuts, and the impact is already horrific. And it’s only going to get worse.

I’m usually not an alarmist, but the choices facing the HIV Planning Council were nothing more than the devil’s bargain. Because of Governor Schwarzenegger’s cuts, we must find dollars to cover the viral load test that informs physicians about whether or not the mix of medications is working. Because of the elimination of DentiCal, funds must also be added to dental care so rotting teeth can be removed before they cause profound health complications and cardiac problems. To meet these needs, funds must be eliminated from programs that help people living with HIV/AIDS with food, housing, legal assistance, bus passes and assisted transportation programs that help them get to their health-related appointments.

The bottom line is that the governor chose public park preservation over the lives of the people of our state.

And I’m left to wonder how it is that we are even tolerating this travesty that passes for public policy? One answer was clear today: no one sees the people who will pay the ultimate price.

Scores of them came to this meeting to beg for their lives.

They are people whose lives -- and whose children’s lives -- have been devastated by HIV and they now have limited access to any resource, including healthcare. They are people who do not have a healthcare insurance option, who are often too ill to work full time or at all, who are struggling to climb out of the grasp of poverty and disease. They are people whose lives depend upon the thin lifeline public health throws them. They face eviction or homelessness, have little food and less nutrition (even though they must take chemotherapy strength medications). They often cannot pay the electricity bill, or afford a taxi ride after medical treatments that leave them exhausted. These are the people who will pay the price.

I’m well aware of the lament “we have to be fiscally responsible.” I agree. I’m all for it!

I agree, let’s be fiscally smart and responsible. Let’s stop pretending taxpayers don’t end up footing the bill and start using every intervention we can to prevent the worsening of the disease and devastation that will ultimately cost us billions more. Let’s stop bankrupting people who have a serious illness. Let’s stop hiding the real cost of these cuts in both dollars and human suffering.

And let’s stop pretending “some people” deserve this. No one deserves the fear and humiliation of having to beg for a chance at life or their children’s lives.

We don’t have to settle for this and it doesn’t have to end up a shameful, hidden, horrible truth. Let’s make the tragedy and voices of the people heard.

Every elected official -- your U.S. Senators, the Governor of California, the California State Assembly members, the California State Senators, every member of the San Diego Board of Supervisors -- should find their call sheets and their e-mail boxes full. Full of the stories of lives dismantled because of disease, the costs of healthcare and the even larger costs of having no access to healthcare. There should be phone lines full of fierce healthcare advocates asking for appointments with elected officials to brief them about the “on the ground” impact of the governor’s actions, and painting the real life picture of the people who are really paying for this travesty that passes for public health policy.

Make those calls, write those e-mails and letters. Use your voice to help today.

Don’t let the Governor choose parks over people so easily.

Contact Your Elected Officials
U.S Senators:
U.S. House of Representatives:
California State Assembly:
California State Senate:
San Diego County Board of Supervisors:

Wednesday, July 29, 2009

Dear Friends,

I know that we all share a deep commitment to fighting HIV/AIDS and to ensuring quality care and services for those impacted by this pandemic, so I wanted to let you know personally about the devastating State funding cuts to HIV/AIDS programs and services.

Yesterday, Governor Schwarzenegger line-item vetoed close to $52 million in funding to the State Office of AIDS. These funds support HIV/AIDS education and prevention, therapeutic monitoring/viral load testing, HIV testing, early intervention services, home and community-based care and housing.

Although Californians living with HIV/AIDS will still have access to lifesaving medications under the AIDS Drug Assistance Program (ADAP), these cuts will make it extraordinarily difficult to determine whether the medications are working (viral load testing), or even if someone is positive and might need to begin medications (HIV testing). The cuts also devastate one of the most promising intervention systems -- early intervention services for those newly diagnosed -- and eliminate all of the few remaining prevention opportunities.

While we all know the state budget is more than a mess, and we knew some HIV/AIDS funding cuts were likely, the depth and scope of the Governor’s cuts are unfathomable.

Throughout our state, we are still sorting out exactly what these numbers will mean following the Governor’s unexpected decimation of so many systems of care, including those for people living with HIV/AIDS and for children from low-income families. Options are unclear but are frantically being researched.

It’s taken more than 25 years to build up the programs and services for people living with HIV/AIDS in our state. No victory came easy, and many spent their last days and breaths advocating for compassion, for care and for adequate funding. With all of our efforts, it is still true that every 9 ½ minutes someone in the United States is infected with HIV and 1 out of 5 of those people who are infected DO NOT KNOW they are infected.

Governor Schwarzenegger’s blue-pen frenzy dismantles a system of care that had become a model, not only for other states, but internationally. A model that has helped keep people alive and provided a quality of life that people with HIV/AIDS didn’t have just a few years ago. We’re not just taking apart a safety net, we’re destroying the system of care itself, and ensuring that the most vulnerable won’t have access to the care and treatment they need.

While we are still figuring out the exact financial implications of these cuts to services in our region, it is clear that losing this funding will be devastating. Please know that we will keep you informed the moment we have more specific details.

Given our mutual and profound commitment to helping those impacted by HIV/AIDS, many of you are asking what you do to help. We will likely have many calls to action in the next few weeks as the reality of these cuts begins to directly affect San Diego area programs and services.

But today, I hope you will do one thing -- please sign up for AIDS Walk San Diego and send a note to your friends asking them to contribute to your efforts in the wake of this tremendous loss of resources. Right now, in the face of this blow, I believe it so important to show people living with HIV/AIDS that we care deeply and that will continue to fight for them. We will continue to stand up for them -- and we will walk, always by their sides, as we face the challenges of this ongoing pandemic together.

AIDS Walk San Diego is a program of The Center.

Monday, July 27, 2009

We Can Do Better Than This

There are moments when the chaotic noise of political rhetoric about equality and healthcare reform is forced into the background by the reality of the human suffering. The kind of suffering that pierces the hype and spin and speaks directly to my heart. Unfortunately, in HIV/AIDS work, it happens around this time every year as we deal with fears and concerns about governmental funding cuts. This year is different – the stakes are much higher and the fears of those without health care resources are well founded.

Public health, like basic human rights, has been a huge part of my professional life. Three public health issues powerfully shaped my adult life, my work and my focus for the last 20 years -- HIV/AIDS, mental health issues and cancer, particularly breast cancer.

I completed graduate school and entered professional life a couple years before the 1996 medication breakthroughs for HIV. I came of age professionally after losing scores of my closest male friends and mentors and began my career by serving the hundreds who were suffering from and dying of HIV. After 1996, with better health care, better policy and new medications I was able to serve clients who were living with HIV/AIDS. As they began to live longer, I could spend time helping to build an inclusive network of care that could provide access to those who were uninsured or had fewer resources.

Every year in the summer months, the HIV Planning Council of the County Board of Supervisors (a remarkable coalition of more than 50 dedicated consumers, providers and community members) take up an annual review of local San Diego data and the needs of those living with HIV/AIDS in order to make budget recommendations for the coming year.

The committee charged with making those recommendations to the County Board of Supervisors is the Priority Setting Committee of the Planning Council. I have served as chair that committee for five of the eight years I have served on the Council.

This year’s budget process is almost too excruciating for words.

This year I could feel the sting behind my eyes as I listened to a mother of three children who has been infected for three years beg for us to find some money to help case management services stay open so she and her children can survive. I listened to a young man of 18 who haltingly and politely thanked everyone for their work and asked us to try to find prevention dollars to help educate his friends so they don’t have to suffer this disease. I listened, heart breaking, to the gay man of 45 who sero-converted right after the end of his long-term relationship; a man who apologizes for needing services, but he’s lost his job, and thus his health insurance, because he’s been sick.

Every 9½ minutes someone is infected with HIV. Every day in San Diego someone new is diagnosed with AIDS. Yet once again the State of California’s budget is uncertain. Well, I guess we should say cuts are certain to happen, it’s how deep and painful they will be that remains unknown. The Ryan White Treatment Modernization Act hasn’t been renewed or reauthorized by Congress and the costs of providing basic care are spiraling. And the nation continues to debate the necessity of health care reform.

But those are just the facts. As I sit in committee meetings, the facts fade away and it is the people who come into bold relief. The members of the public and consumers who come to this committee to try to participate in their own healthcare, to provide testimony and to try to find hope for themselves and others. These are real people, in real pain, terrified about their future and the futures of their families and all those impacted by HIV/AIDS. People who can’t get health insurance, people who can no longer work, people who need access to health care to continue to live. Each year, while the number of those living with HIV (and their medical needs) grow, the funding doesn’t. And each year, consumers come to testify and beg for health care - beg for hope.

Every year I listen and think, “Is this really the best we can do in America? Really?”

We’re one of the richest countries in the world, where pharmaceutical companies spent $44 billion dollars last quarter on lobbying and our banks awards multiple billions in bonuses to a few individuals? In this country with our new cars, homes and daily doses of Starbucks; the best we can do is to beat the drum of “no new taxes” and then make those who suffer come to beg for life-saving services for themselves and their families?

We can do better than this.
We have to do better than this.
This is not the world I want my children to inherit.