Director of PACT

I first met Margarita in the emergency room of the Brigham & Women's Hospital.  A small Latina woman with thinning black hair, she was curled up on a gurney throwing up into a pink basin.  This was her ninth visit to the ER in the past year for tetany, muscle paralysis due to low blood calcium.  Margarita has DiGeorge's syndrome, a congenital condition marked by abnormal calcium metabolism, cognitive deficits, and immune deficiency.  Had Margarita been able to take just two calcium tablets per day, she wouldn't have been in this state.  But her life was too complicated.  With an IQ of 62, she had just received her third eviction notice for non-payment of rent, DSS was threatening to take her 4-year old son away, and she was hungry.  To make matters far worse, Margarita was very sick with AIDS.  Her CD4 count, a measure of the immune system, which normally runs between 600 and 1000, was 11.  She was not on HIV medications, because her doctors feared that her inability to take them regularly would lead to drug resistance.  And so, Margarita was languishing.  Her prognosis was dismal, and the costs to her and society were enormous.

Despite the widespread impression that AIDS in the United States is well controlled, stories like Margarita's are more and more common.  Figures recently released from the Center for Disease Control and Prevention (CDC) show a disturbing increase in the number of new AIDS diagnoses in the United States.  CDC officials suggested that failure of drug treatment, poor adherence to medications, and late diagnoses are likely reasons for this trend.  Not apparent from the report was the fact that poor minority individuals, like Margarita, disproportionately and increasingly bear the brunt of the HIV epidemic.  And once infected, they are more likely to die from their disease.

These increases in AIDS diagnoses and deaths are not the result of increased HIV infection rates.  In the 1980's, the time from HIV infection to AIDS was short, and AIDS trend data were closely linked to trends in HIV infection.  Now, however, anti-viral medications can nearly normalize life expectancy among HIV-positive individuals.  Today, people who develop AIDS and die either lack access to effective medications of can't take them properly.

Most people sick with and dying from AIDS are impoverished and marginalized.  Major disparities in socioeconomic status, stigma, and distracted political focus restrict their access to quality health care.  With increasing budget cuts, more poor and immigrant individuals are losing their health insurance.  High drug costs force Medicaid to limit treatment opportunities for those in greatest need.  Despite the fact that many HIV patients confront a host of other pressing problems, such as homelessness, hunger, substance abuse, and mental illness, urban HIV clinics are losing their social workers, counselors, and case managers.  Furthermore, AIDS service organizations are forced to lay off support personnel and scale back services designed to help keep HIV patients fed and engaged in therapeutic relationships.  In short, our system is failing.

Why should we care?  There are moral, medical, and financial reasons.  Unless we tackle the HIV problem, future generations will look back on our failures with disbelief.  We have the technology to keep people from getting sick and dying.  Yet, we are not finding ways to treat most affected.  We watch, as millions of people, here and abroad, die unnecessarily.  HIV treatment makes sense.  It keeps people healthy and productive.  It also reduces transmission, because people who are on treatment are less infectious, and, given the option to live, they are more likely to take care of themselves and others.  In addition, keeping people on medications is cost-effective.  The money that society spent on Margarita's emergency room and in-hospital care could cover the expenses for several Margaritas who are kept well and out of the hospital.

There is a great and increasing need for creative, collaborative, and responsible approaches to effectively address the HIV problem.  We need a commitment of will, funds, and people to support, sustain, and expand the HIV care initiative.  Without them, HIV will decimate people like Margarita and embarrass our generation.

These needs can be met.  In 1999, a group of community residents in inner city Boston became alarmed by rising HIV incidence and mortality rates in their neighborhood.  They formed the Prevention and Access to Care and Treatment (PACT) Project.  With the help of Partners In Health (PIH), a local NGO, and physicians from the Brigham & Women's Hospital, these community residents were trained as Community Health Promoters.  They now serve as the "glue" between disenfranchised HIV patients and available systems of care.  They help the forgotten patients negotiate the complex maze that is our health care and social service system and accompany them, as they walk through life with HIV.  They point out gaps in the treatment web and collect stories that will help us mend them.  PACT health promoters now serve over 100 complicated patients and deliver home-based advocacy and education, harm reduction, and  directly observed therapy (DOT) of life-saving HIV medications.

One such patient is Margarita.  Her life has stabilized.  Her family is intact and fed.  For the past year, she has been receiving DOT of her medications.  Her CD4 count is now almost 150, and she not been to the ER once for calcium infusions in the past year.  More and more health care and social service providers refer their patients to PACT for assistance.  But PACT, like other AIDS service organizations -- in a period of drastic budget cuts -- is suffering from a lack of funding and societal commitment.  Tomorrow's generations need not look back and ask, "why did we not act?"