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.