One Woman's Odyssey
An African woman's quest for survival and dignity - in America
by Chatinkha Nkhoma
Nowhere are women more disproportionately affected by HIV than in Africa, where in some cities an estimated 80 percent of pregnant women are HIV-positive. For most African women, the decision to pursue treatment for HIV is an impossible dream that few have achieved. Here, Chatinkha Nkhoma talks about her journey from almost-certain death to her new life in America, one marked by her daily struggle to survive. “I feel blessed,” says Nkhoma. “God has kept me alive for a reason. It’s my mission to speak out, to talk about what is happening to women in Africa, who are dying like flies.”

My life took a drastic turn from the time I was diagnosed with AIDS in June 1999. I believe that turn began around March 1997, when I began experiencing signs of the disease. I didn’t know at that time that these were AIDS symptoms. I had chronic cramping, painful diarrhea, night sweats, burning feet, and flulike symptoms that I mistook for malaria (and treated as such), along with strange burning rashes, and what I later found out was oral, anal, and vaginal thrush.

At that time in Malawi, where I am from, we believed that the symptoms of HIV were rapid weight loss accompanied by tuberculosis, shingles, and diarrhea. Since I wasn’t losing weight and didn’t have tuberculosis or shingles, I ruled out AIDS. I had prided myself on being sexually careful and even preached condom use to my friends, though occasionally, I put myself at risk by having unprotected sex. Still, I reasoned, I wasn’t at high risk; I dated carefully and didn’t sleep with multiple partners. But I guess that wasn’t enough. I needed to become a sexual saint to avoid infection.

In Malawi we spoke about AIDS in whispers and as a piece of gossip.

“Have you heard? So-and-so is said to have died of AIDS. Eh! Eh! What a shame.” We then sighed hopelessly and changed the discussion. AIDS remained a hush-hush topic, silently wiping us out.

In 1997 at age 35, I had reached a comfortable professional and financial status. I had earned a bachelor’s degree in international affairs from George Washington University in the United States, had a lucrative business in Malawi, drove an expensive 4 x 4 vehicle, and was in the process of buying a big plot of land on which to build my dream house. I was gearing up for a high-level diplomatic job when lightning struck. When I look back I believe it was God’s wish to rid me of the excess baggage that I was carrying. He was preparing me for my current activist life.

I was very fortunate that my family stuck by me. Unfortunately, while I was sick, my brother Mike, who had been the first in our family to be diagnosed with HIV, committed suicide. He purposely overdosed and died in his sleep. He had lost his wife to AIDS a year and half before. It was such a tragedy, especially because I was so close to him.

As in all other African countries, there is no such thing as treatment for AIDS or HIV in Malawi. When you get infected, death is certain. I estimate that less than .5 percent of Malawians can even begin to think about treatment. The average citizen’s annual income is less than U.S. $500, and the cost of HIV medication [AZT, 3TC, Crixivan] is an estimated $1,000 a month, which makes getting the drugs a faraway dream that immediately turns into a nightmare for most of us. We have free health care, but the medical system has collapsed under AIDS, and private pharmacies have taken advantage of the situation by charging high prices, even for antibiotics. In Malawi people die of curable diseases faster than from AIDS complications.

My own savings diminished when I began treating my pre-AIDS diagnosis symptoms. Things got worse and worse until a final blow of Pneumocystis carinii pneumonia landed me in the hospital in February 1998. I spent everything I had to stay alive. My doctor recommended that I take AZT and 3TC, the only drugs available [in Malawi] at the time besides ddI. To help me out, he bought the medication with his doctor’s discount. After two weeks of therapy, I began to feel better and regained my strength. By the end of the sixth week, I was back at work. For me, there is no doubt that without the drugs I would have died.

But getting my health back brought other problems. By the third month on therapy, I was running out of money and, to add insult to injury, our national currency fell, which meant higher drug prices. I cried so much when I heard, thinking that just when things were getting better, this had to happen. I felt so hopeless. In my struggle to keep taking something, I ended up following part of the regimen. That is, I reduced my intake of AZT to two capsules three times a day, with one 3TC pill. I dragged this out for as long as I could, and finally dropped the 3TC. I’m not sure if this had any physical effect on me because I had no way of monitoring my viral load or T-cell numbers.

During this desperate time, my pharmacist would open a bottle of medicine and calculate the cost per pill, selling me a day’s or a week’s worth. It was pathetic, but the will to live supercedes rational action. The day the cost of medication increased, I vividly remember the pharmacist and I spending a long time crying together in her office.

I couldn’t give up. Taking the last of my money, I decided to use a complimentary airline ticket from KLM Royal Dutch airlines, and traveled to Maryland to visit some college friends. I hoped to do some income-generating activities and see if I could buy HIV drugs more cheaply (I had been misinformed that they cost less here). Three days after my arrival, I suddenly got sick and was taken to a neighborhood clinic. I immediately enrolled in its program. I couldn’t believe it when I heard there were free AIDS treatment programs here. I wasn’t sure I would qualify, being a noncitizen. And if I did, I would have to relocate.

This posed a very difficult situation for me. On my own, I couldn’t afford to buy HIV medications much longer. No medications spelled imminent death. And I was ill and emotionally unprepared to leave my family and face AIDS alone. Still, I felt I had no choice, and my relatives pushed me to remain here.

Because I had been taking HIV medications erratically, and because I didn’t have a medical history with me, the doctor who first saw me at the Maryland clinic decided to take me off all medications, including Bactrim for my pneumonia—even though I had a CD4 T-cell count of 36 and a viral load of more than 500,000 copies. Back then, I didn’t know better and trusted that the doctor knew what she was doing. I believed she would not put my life in jeopardy.

After a few weeks off medications, I began to get sick again and developed ugly rashes. All my previous symptoms returned. I was rushed to the emergency room with another attack of PCP. The irony was that I had moved to America to find health, and here I was dying. It was then that the doctor finally gave me Combivir (AZT and 3TC), even though I had taken it previously and may have developed resistance, and Crixivan, along with prophylaxis treatment for the pneumonia and cytomegalovirus. This time, I made slow progress toward recovery. I was now stuck with a high hospital bill and, being a noncitizen, couldn’t legally work. Fortunately, the United States provides emergency medical aid for HIV patients.

It was during this long recovery that I met Pat Nalls, executive director of the Women’s Collective, an advocacy organization in Washington, D.C. She quickly briefed me on my rights as an immigrant, which led me to launch a grievance process against the clinic. This only further aggravated the clinic staff. But it taught me that no matter what or where, my health is my responsibility.

After the hospital setback, I faced the challenge of setting up some sort of temporary life and regaining my sanity. I adhered well to the medication, and my health improved. Within a month, my viral load fell dramatically, from more than a half million copies to 700 copies, down to an undetectable level a month later. It is still undetectable today. My CD4 T-cell count rose more slowly, from 26 to 76, to my current peak of 217. It is still rising.

I have been one of the blessed Africans who was able to get drugs that have kept me alive up to now. But the cost has been as high as one can imagine. I have lost everything, professionally and financially, by relocating to the United States. The irony is I cannot work here, but I have a decent job back in Malawi. Now I must rely on the charity of friends and strangers, and sometimes I am so broke I don’t even have money for a bus ticket to get to the hospital, or to put food on my table. I constantly face eviction. Thanks to a number of friends I have made in the AIDS community, I have managed to survive. But this type of life strips one of dignity and is humiliating. The choice is obvious, but tough all the same.

Two years after squarely facing death, I have not regained my full health. And I don’t expect to. I know that once you have AIDS you can never feel as well as you did before. Instead, I’m constantly having one problem after another. I am staying alive, but my body has had to deal with the side effects of the toxic drugs, even though I have been on them for less than a year. I have also had to cope with anemia and skin diseases that have occurred as reactions to some medications. So some days are good and others are pretty terrible.

Right now, they’re pretty bad. I’m unable to walk because of bone complications that have attacked my hip and other joints. I’m not yet sure if these are side effects of the HIV drugs or due to the disease itself. But, by reaching out, I’ve met other HIV activists and recently managed to enroll myself in a clinical study of drug side effects at the National Institutes of Health. It was a pleasant surprise to go to a clinic where the staff was so professionally courteous and compassionate. But it’s also very frustrating not to be able to get around, since my current activist work requires that I travel a lot. By now, I somehow have a strong conviction that this state of my health is not permanent and will improve.

But what about my African sisters? Their plight is still being overlooked, just as it is for women all over the world. In Africa, women have been carrying the heaviest burden, being both the providers and protectors of their communities. Not only are women and girls more vulnerable to infection, but they lack the means to protect themselves. Traditionally, women must also care for those who are sick and dying, and now, for the millions of AIDS orphans. Through all this suffering, African women—positive and negative—are enduring the extremities of the AIDS pandemic with remarkable strength. Their needs and contributions must be addressed.

Sometimes, I wonder if it is worth it to live like this. But all in all, I’m grateful to be alive, and I want to do nothing else than work toward fighting this enemy, HIV. There are millions and millions of my brothers and sisters back home in Africa who don’t have the chance that I do, and who have no voice. They are dead and are still dying. People like my late brother Mike, my sister, cousins, brothers and sisters-in-law, friends, and neighbors. While we are wasting time debating who should get AIDS medications, families like mine are being wiped out. It’s a battle I wish we could all join arms in, because only together can we conquer AIDS. And if we don’t, nobody will be safe anywhere.

Bio: Chatinkha Nkhoma is an Malawi-born HIV-positive activist living in Maryland who is working to make HIV drugs available in Africa.

Women with HIV: A Global View
Women make up 46 percent of the world's adult HIV population, according to the latest global estimates by UNAIDS and the World Health Organization. In sub-Saharan Africa, that figure is much higher: 55 percent of all HIV cases occur in women-more than six positive women to every five positive men. In several African countries, teenage girls aged 15 to 19 are alarmingly vulnerable, being five to six times more likely to be HIV-positive than boys the same age.

In the News

• Is the Clinton Administration turning its back on HIV-positive prisoners? On January 18, the Supreme Court announced that it would not hear the appeal of Davis v. Hopper, a 13-year-old case that sought to overturn the segregation of HIV-positive prisoners in Alabama state prisons. The refusal, which leaves the policy intact, followed the recommendation of Clinton's Solicitor General. As we reported in our Dec./Jan. issue [HIV Plus No. 6], Alabama's policy bars HIV-positive prisoners from participating in a vast range of programs-from mechanics classes to religious services-that not only improve their quality of life, but allow them to earn early parole. Alabama is one of two states that segregates all HIV-positive prisoners (South Carolina just joined the list). In the wake of the decision, a national coalition of advocates and organizations issued a sign-on statement condemning it and calling for immediate steps by the Clinton Administration and Alabama officials to end such discrimination. To get involved in national efforts, contact the National Prison Project of the ACLU at 202-234-4830.

• Last year's activist Dream Team, Health GAP—GAP stands for Global Access Project—keeps on proving the power of informed dissent. We last reported on Health GAP in September [HIV Plus No. 5], when the group helped mobilize protests against the U.S. government's strong-arm attempts to block South African access to affordable life-saving meds. Since then, Health GAP has kept up the global pressure-with inspiring results. When the dust settled at last fall's protest-ridden World Trade Organization meeting in Seattle, the U.S. government had shifted its policy on compulsory liscensing and parallel importing-two regulations that put affordable HIV medications within reach-announcing both trade practices were within the legal rights of all sub-Saharan African countries.
  In January, Health GAP turned up the heat again. The result: a U.S. government letter to Thailand affirming the Thai government's right to produce less costly generic ddI. Next stop: the world AIDS conference in Durban, South Africa (see related box). Health GAP is working with South Africa's activist group, the Treatment Action Campaign, on an opening day protest. Ready to join the global fight? Find out about upcoming actions and recent news at www.healthgap.org.

- EB

Durban, Darling?
Bound for Durban? If you're not, you may miss an important chance to swap talk and strategies with women from southern Africa about how they're coping with HIV and what we can do to help. The XIII International AIDS Conference takes place July 9-14 in Durban, South Africa, and, since it's taking place at the epicenter of the epidemic, promises to be special. In addition to the official program, a range of satellite meetings are planned, including "Ubombano IoMama! Women Working Together." This two-day conference on women's issues will look at new challenges in prevention, care, and treatment for women, with a focus on gender, human rights, sexuality, and HIV. Whether you'll be in Africa or not, you can get involved in this event, which we at HIV Plus are helping to organize. A web site with chat rooms and a listing of other satellite meetings has been set at http://www.womenatdurban.org, so check it out.

To register for the main conference, go to http://wwaids2000.com.

- ACD