Starving the Sick
As we can't forget, a group of religious fanatics attacked and destroyed the World Trade Center (WTC) on September 11, 2001. Unfortunately, throughout 2001, even before 9/11, a group of religious fanatics and others attacked and tried to destroy the humanity of many people suffering from HIV disease.
Destroying a group's humanity is the first step in attacking the group itself. The Traditional Values Coalition (TVC), a public policy organization with 43,000 member churches, posted this on its Web site: "There is no way homosexuality can be compared to race or ethnicity. It is a perverse sexual behavior, not an immutable trait."
Not to be outdone, Jerry Falwell had this to say to help relieve our grief immediately after 9/11: "I really believe that the pagans, and the abortionists, and the feminists, and the gays and lesbians who are actively trying to make that an alternative lifestyle, the A.C.L.U., People for The American Way -- all of them who have tried to secularize America -- I point the finger in their face and say, 'You helped this happen.'"
It is very easy to brush off the statements of nut cases like Falwell, his followers, and the TVC, but how about the sane folks? What were they up to before and after 9/11? A New York Times article dated May 15, 2001 gives us a clue: "Health agency seeks to close 27 clinics."
The health agency the article writes about is The New York City Health and Hospitals Corporation. They asked the state for permission to close 27 satellite clinics located in schools and clinics in poor neighborhoods. Of course many of these clinics are in communities of color.
Funding CutsMoney is the problem, they say. "The number of uninsured patients has also ballooned by 30 percent in the last four years alone." Two thirds of the patients are uninsured, the article tells us. It doesn't tell us how many are HIV-positive. We know from The State University of New York Downstate Medical Center that people living in Brooklyn, New York, are three and one half times more likely to be infected with HIV than people living in any other city in the U.S. But since these Brooklynites are poor and likely to be people of color, we should tell them to take two aspirins and call the doctor when they get medical insurance.
An AIDS Service Organization (ASO), The Momentum AIDS Project, was forced to close one of its two Brooklyn meal sites in March, 2001, long before 9/11, because of a lack of funds. Closing ASOs is not the proper response to what is in fact a growing infectious disease problem.
After a disaster occurs, whether it's an act of God or an act of war, it is only fitting that an outpouring of sympathy and financial support be directed to the victims of the disaster. Unfortunately, after 9/11, it also happened that other people and organizations in need, such as ASOs, found some of their individual, corporate and discretionary government funding either cut or diverted to disaster aid.
Disaster Predates 9/11We must remember, however, that the support given to fight HIV/AIDS began disappearing well before 9/11. For the past couple of years, funding drives have been bringing in less and less money. Local, state and federal funders have been cutting back on the amount of money needed to adequately fight HIV/AIDS.
As a society, we have never been good at prevention. Since the U.S. death rate from AIDS has gone down, the assumption is that the disease is a problem of the past in this country. New diseases are taking center stage and World AIDS Day 2001 was largely ignored by the mainstream media. It is as if our consciousness is driven by the latest fashion. AIDS is out. Cancer is cool.
It is for the most part ignored that every month we find out about a new condition that is affecting people with AIDS. One of the latest problems to be discovered is the relationship between pulmonary hypertension and HIV. The virus itself as well as anti-HIV medication may be contributing to this new opportunistic infection.
Are We Really United?Another way of looking at this reduced concern about HIV/AIDS is through the lens of racism. Now that the AIDS epidemic is hammering away at people of color, especially women, our concern as a society is ebbing. Do we have a scale for concern that runs from first to last? Are the first and most important rich, white, Christian, heterosexual males? Are the last and least important poor people of color, Muslims, lesbians or single mothers? It seems so.
The excuse of a lack of money is a weak one. For example, we know that the airline industry was having financial difficulties long before 9/11. The New York Times reported that after 9/11 the federal government, with the help of well-placed airline lobbyists, found billions of dollars to bail the industry out.
We see signs everywhere that say we are united and all pulling together. But there should be an asterisk next to "all" listing the millions of people that are being left behind. The list should include the hundreds of thousands of working people being laid off, the poor of all races and the sick suffering from AIDS and many other illnesses. The competition for who has the most popular disease should be left in the garbage pail of history. There is enough money to fight all illnesses. This is the richest society that the earth has ever nurtured.
In a sea of money, the AIDS service community has had to learn how to do more with less. Doing more with less has become our motto. The catastrophic events of 9/11 have only served to underscore our predicament. The aftermath of 9/11 would probably be different if 9/11 had been a natural disaster like an earthquake that had done the same amount of physical damage and produced the same number of deaths and casualties. However, since we were attacked, the emotional impact on our society has been tremendous. People who are HIV-positive are also members of our society. They are already dealing with tremendous emotional stress. They were attacked before 9/11 by HIV, a potentially fatal illness, and on 9/11 by terrorists and they continue to be attacked after 9/11 by HIV.
Struggling ThroughSince I am an HIV/AIDS nutrition specialist working here in New York City, I want to focus on how various ASOs are managing to feed their clients. Gay Men's Health Crisis (GMHC) served 67,000 meals in the year 2000. In 2001 they served 75,000 meals. That is an increase of over 12 percent. They have accomplished this feat by increasing the number of clients that can dine with them to 85 for each of the first two seatings of each meal. On most days they have 3 seatings. On special days they increase their seatings to 4. They do this with the same size staff and the same budget. To cover their increased costs they have tried to get additional donations and supplement their staff with more volunteers. As of this writing they are serving 250 to 300 meals per day and their overall program has had to absorb an additional 47 percent more clients.
God's Love We Deliver (GLWD), an organization that delivers meals to home-bound people with AIDS, was stopped dead in its tracks by the terrorist attack on 9/11. On 9/11 they began their day as usual. By the time the attack occurred, they had delivered life-saving meals to 70 percent of their clients. Because of their proximity to Ground Zero, their telephone service was knocked out and they were unable to use their vans to make deliveries from 9/12 to 9/16. On 9/17 they resumed service and on 9/18 service went back to normal.
Their regular telephone service was replaced by cell phones, so part of their struggle was getting the number out to the AIDS community. At the onset of the epidemic, PWAs often became home-bound before they died. Clients of GLWD today are not at home waiting to die. They are not necessarily healthier, considering the long list of additional illnesses that people with AIDS deal with, but they are more mobile.
Consider a person who has to go to dialysis several times per week. Without the lifeline of the phones, arranging deliveries of special renal diets would have been impossible. One of their key funding events, "The Race to Deliver," had to be postponed from September until November. They had to scramble for funds to make up the short fall. After the holidays when life returned to "normal," the usual dip in clientele did not occur, putting additional pressure on the agency. Another thing that did not happen as of this writing was a payment of $500,000 promised by our government to help offset some of their 9/11 losses. But well before 9/11 problems were brewing at GLWD. Since 1999 their funding has been flat and their staff decreasing even though expenses have been going up. As a result they have been working on some strategic changes in order to survive.
The ASOs Housing Works and The Village Center for Care are both Medicaid-reimbursed for services they provide. So far, contracted funding from the state and federal government has been untouched. Therefore they should not be experiencing any problems with providing critical nutritional support to their clients. But since the HIV/AIDS community is actually an interlocking network of support systems, when one part of the network is damaged the pressure is felt all around. Imagine the network is a car. If you get a front wheel blowout at 60 miles per hour it will be difficult to control your car. As meal sites are closed and cut back, VCC and HW are picking up the short fall with no additional funding.
Momentum's ExperienceFor the past 16 years, The Momentum AIDS Project has provided nutritious meals and counseling to people with HIV/AIDS. It started as a volunteer-driven program at St. Peter's Church in Manhattan serving one meal per week. By 2001 it had grown into a program offering meals, pantry bags and counseling seven days per week at ten different sites in Manhattan, Brooklyn, the Bronx and Queens. Momentum's work is not charity but a calculated, research-backed effort at cost-control.
A large body of scientific evidence shows beyond doubt that well-nourished and well-informed people with HIV/AIDS live better and longer than those whose eating is controlled by poverty and ignorance and whose understanding of their illness is governed by rumors.
How does smart eating save money? One dollar spent on food may save $100 in medical costs and hospitalization. Providing meals costs Momentum $12 per client per day. A hospital charge for the same day may be $1200 or more.
Everyone knows that eating well improves health. But few know the specific effects of choiceless and irregular eating on people living with HIV/AIDS, including poor people, who even in the absence of infectious disease tend to eat badly:
But $12 per client provides more than regular, nutritious meals. When people are hungry and anxious, they cannot listen to what is being said. After they eat, their ability to listen improves. Momentum's meal sites are much more than places to eat, they are information translation centers. Clients bring in information that is unclear to them that they have been given by their doctors, nurses, hospital dietitians, social workers, and others and we translate that information into languages they understand. Without this translation service, the information they got and the money it cost to get it to them would be lost. $12 per day is a small price to pay.
In 1998, Momentum served 39,704 meals. At the end of 2001, Momentum served 54,588 meals, an increase of nearly 40 percent without a corresponding budget increase. On November 30, 2001, Neal Cohen, the then-Commissioner of the New York City Department of Public Health, gave Momentum, Harlem United and several other community-based organizations awards for "Outstanding Community Service."
Almost in the same breath, the funding cuts to these organizations were announced. Momentum is starting the year 2002 with three fewer sites than it had in 2001 and a reduction in staff. The remaining sites are only open six days per week. Clients are restricted to eating a maximum of four meals and collecting three pantry bags per week. Support staff at the home office is available only five days per week. And the numbers of clients keeps on growing. "Starving the sick" is not a sane motto for our society.
Edwin Krales is Coordinator of Nutrition and Outreach for the Momentum AIDS Project, which can be reached at 212-691-8100 or www.momentumaidsproject.org.
Back to the July/August 2002 issue of Body Positive magazine.
This article was provided by Body Positive. It is a part of the publication Body Positive.