When dreams die
By Gwen Evelyn
When Justin was a little boy, he had many dreams, like many children. His favourite dream was about what he would be when he grew up. He wanted to be a pilot.
Today, his glamorous dream will never be fulfilled. As he clutches to life, trying to get through each long day with just his little transistor radio for company, his pilot dream has gone. For good.
Justin (not his real name) can hardly walk because his legs hurt. In fact, there is nothing much he can do for himself. His body is wasted, his face gaunt. He looks much older than his 33 years. He sadly remembers the days when he was strong and active as he worked to earn a dollar.
Justin knows he is very ill. He knows he will die. It’s just a matter of time.
“When God ready, he will take me,” he says.
Justin was diagnosed in the 90’s with HIV. It was an afternoon like any other when he started to experience dizziness and had to be rushed to the hospital.
The doctor took a blood sample for a test and one week later, the result was ready.
He was HIV positive.
Justin knew that sometimes, people are misdiagnosed. Hopeful, he did a second test. There had been no mistake.
Justin became very ill and had to spend three weeks in the hospital shortly after the diagnosis. He became weaker and weaker since he could not eat. There were also constant blackouts.
Justin knows exactly how he got himself into all this trouble. Lying on his little bed with only a sheet covering his body, he admits that his troubles are the result of sleeping with prostitutes in Guadeloupe.
“I used to have three or four one night ...” he says.
“I never liked to use condoms. Now I say best I had used the condoms ... I just waste my life away,” he said.
When The Chronicle visited Justin’s home, he hadn’t walked all day. He also had a hard night coping with diarrhoea. He points to a bucket outside. It is filled with messy linen that someone has soaked for him with the intention of returning to wash later in the afternoon.
It was raining that day and Justin drew attention to a couple of drips coming from his roof. Someone was supposed to fix it but they wanted to be paid and Justin does not have the money. He points to a tiny hole in the roof. “When the rain powerful, I have to put a bath towel there (on the bed)” he says.
“In the past, everybody was with me. Not now,” he says.
He added: “Is strong I strong mek I don’t die yet ...”
Justin lives by himself but a relative or friend would visit, bringing him food or some small item he needs. As The Chronicle left Justin’s side, he had just gotten batteries for his tiny radio. Delighted, he turned it on and old music from the rock steady era filled his little dwelling.
“This is my friend ... ” he laughs.
Justin is just one of several million HIV/AIDS victims all around the world and one of many in Dominica. The number of local cases is growing uncomfortably.
Just ask Health Educator, nurse Deborah Bethel who is attached to the Ministry of Health and widely regarded as one of Dominica’s leading activists against the HIV/AIDS epidemic.
Nurse Bethel knows only too well about the pain, the loneliness, the desperation, the sadness and depression that accompany HIV/AIDS. According to the official figures, about 262 persons in Dominica are positive. But Nurse Bethel thinks that the problem is much, much bigger because there is an informal reporting system. She says that multiplying the 262 by 10 would give the real figure. Far too many for a population of about 71,000. In Dominica, like many other countries, there is a stigma attached to HIV/AIDs and with it comes discrimination. Bethel said victims go underground. They prefer that nobody knows.
“It’s not a health issue anymore – it’s political, it’s social, it’s economic,” she said. “It will affect us all in one way or another. It does not frustrate me as much as it saddens me ...” she says.
AIDS she said, has left its mark on every generation in Dominica and many of the afflicted are those in the most productive years of their lives.
It is imperative all stakeholders become involved to boost the government's efforts, Nurse Bethel thinks.
“They don’t understand the urgency,” she stressed, adding that the private sector, the churches and others must get involved to address the problem.
There is no fund, no structure in place to deal with HIV/AIDS. “We don’t have 100,000 people. It is something that will eat away at the core of Dominica,” Bethel asserts.
Only recently the island National HIV/AIDS Strategic Plan 2003-2007 to address the disease was approved. The plan states that the potential for the disease to inflict serious social economic and developmental costs upon the island is very real.
“The co-existence of economic stagnation and poverty means that there is very fertile ground to propagate the social and economic fallouts that HIV/AIDS often leaves in its wake,” it says.
The plan recommends that Dominica responds swiftly and aggressively to this impending threat. The challenge for the country however, is that in the face of current economic and developmental constraints, this response must also, by necessity, be cost effective, it says. Essentially, therefore, the response must generate widespread impact at relatively low cost. The plan presents details of such response.
The plan proposes that a National HIV/AIDS Response unit be created within the Ministry of Health and Social Security. This unit should have as its main responsibility the coordination, implementation and evaluation of the Strategic Plan activities.
US$4.5M is required to implement the National HIV/AIDS Strategic Plan over the five-year period. This cost averages US$0.96M annually.
“Although the absolute number of infections in Dominica may be small, with a prevalence rate of 0.3 percent among pregnant women, an epidemic that is nascent in a small country as Dominica can quickly become concentrated or generalized,” the report states.
Many sectors have acknowledged the threat of the disease and their responsibility to join the fight against HIV/AIDS. However, healthy officials say many of them have been lethargic. The response so far has tended to be more ad hoc than an official, sectoral response. The plan is intended to: provide the means by which the existing response to HIV/AIDS may be scaled up; outline a proposal upon which funding requests may be based and identify yardsticks by which the country’s fight against the disease may be measured.
Health Minister, Herbert Sabaroche said that while Dominica knows what it has to do to control the spread of the disease, the island’s problem is funding. He is hoping that international agencies will come to the rescue to provide funding for the programme.
The strategic plan is expected to avoid the loss of about 275 years of Dominican life; safeguard more than US$965, 000 that would otherwise be productivity lost; reduce the demands placed upon the health system for chronic and acute HIV and HIDS related care; increase the level of capital formation within the health sector and improve the technical skills of the sector’s human resource base; improve the self esteem and confidence of the many persons infected with and affected by HIV/AIDS and ultimately reduce the fear, secrecy, prejudice and social intolerance that surround HIV/AIDS.
UNAIDS acknowledges that stigma and discrimination are the major obstacles to effective HIV/AIDS prevention and care.
“Fear of discrimination may prevent people from seeking treatment for AIDS or from acknowledging their HIV status publicly. People with, or suspected of having, HIV may be turned away from health care services, denied housing and employment, shunned by their friends and colleagues, turned down for insurance coverage or refused entry into foreign countries. In some cases, they may be evicted from home by their families, divorced by their spouses, and suffer physical violence or even murder. The stigma attached to HIV/AIDS may extend into the next generation, placing an emotional burden on children who may also be trying to cope with the death of their parents from AIDS,” UNAIDS says. `Live and let live’ is the slogan of the two-year World AIDS Campaign 2002-2003, which focuses on eliminating stigma and discrimination.
Out of 11.8 million young people (aged 15-24) living with AIDS, 7.3 million are young women and 4.5 are young men; 18.5 million of the 37 million adults (aged 15 to 49) living with HIV are women. In the Caribbean, the proportion has reached 52 per cent
Dominica has two facilities where testing can be done – the Princess Margaret Hospital and the La Falaise House Medical Laboratory. The cost at the Princess Margaret Hospital is $40 but the results are not ready until about two or three weeks after testing. Nurse Bethel does not think this is very encouraging for someone who wants to be tested.
The test costs $75 at the island’s lone medical laboratory and the result is ready on the following day.
Nurse Bethel said there are three types of anti-viral drugs available on the market but at an exorbitant cost: EC$983 for a one-month supply. However, Bethel hopes that Dominica can source funds to offset the cost of such drugs now that there is a national strategy.
Sabaroche said rapid testing is available at the hospital but only for emergency purposes such as if blood is required for a transfusion. Sabaroche said persons desiring quick results otherwise would just have to get their tests done at the island’s lone private lab.
“We wish we could provide tests free of charge but the question is, can we afford it,” Sabaroche said. Minister Sabaroche said Government has succeeded in negotiating with large pharmaceutical companies to access drug for treatment more cheaply. He noted that it costs $15, 000 per year to treat a patient but this cost is declining.
Nurse Bethel noted that a hospice is sorely needed for people living with HIV/AIDS.
Apart from celibacy, The key to avoid contracting the HIV/AIDS virus is practicing safe sex which involves using condoms. Bethel notes that the Dominica Planned Parenthood Association has depots all over the island where condoms are being sold at 25 cents apiece. But this in itself is a problem as, in many cases, the brand influences the buyer. She says that a person might be embarrassed to buy a cheap condom.
Both Bethel and Sabaroche agree that education is essential in curbing the spread of the disease as many young people act out of ignorance.
“We have failed; we have fallen short of informing them properly,” Nurse Bethel lamented, adding that information is not readily available in the form of pamphlets.
Health workers need to be educated as well. Nurse Bethel herself has been training people. There is no one else to do it. And there is no one to evaluate whether the persons who were trained have been passing on their knowledge. Many persons have died in their own loneliness as they have been shunned by society. “Our response to them determines their lifespan,” she said. But people who are educated about the affliction can have a better quality of life if their caregivers and family members are educated.
Nurse Bethel said she has been training a few nurses to counsel at their own clinics in different locations. Still, there are not nearly enough counselors in Dominica.
There are not even support groups to help the victims. There were a few such groups, Nurse Bethel recalls. However, they all but one flopped.
The only such group existing now is the Sunny Rainbow Alliance/Young Ambassadors for Positive Living. That group was set up with encouragement from the Commonwealth Youth Programme about one year ago. Bethel said the group also distributes groceries and medication to many persons living with HIV/AIDS. But this requires funding which is scarce. The Optimist Club contributes to the cause.
Health Minister, Herbert Sabaroche said a unit would be established to deal specifically with HIV/AIDS.
United Nations Secretary General Kofi Annan has warned world leaders that the financial and political response to the HIV/Aids epidemic has been woefully inadequate.
“We are not on track to begin reducing the scale and impact of the epidemic by 2005,” he told a 191-nation assembly gathered to review progress on the disease.
A report presented to the assembly outlined shortfalls on a number of fronts, including expanding access to lifesaving drugs, caring for AIDS orphans, preventing discrimination and blunting mother-to-child transmissions of the disease.
UN goals set three years ago included having three million HIV-positive people in the developing world taking AIDS drugs by 2005 and halting and reversing the epidemic by 2015.
Only 300,000 people in developing nations now have access to drugs, although UN figures estimate that between five million and six million people have full-blown AIDS and need them.
Too many of those with AIDS without adequate drugs and health care are right in our backyard. The way Dominica’s health professionals tell it, many local victims tend to suffer in silence, fearing the double jeopardy of the illness plus the social stigma. Meanwhile, the deadly virus continues to slither stealthily through Dominica, often spread by the most unlikely carriers, snatching more and more unsuspecting victims everyday.
For many of these victims, like, Justin, their most productive years will be snatched when they least expect it. Like Justin, the lingering death will drain their bodies and squeeze their dreams dry. The boy who dreamed of becoming a pilot is now a grown man struggling with a deathly reality. He has learnt one of life’s most brutal lessons – what happens when HIV/AIDS comes calling. Dreams die.