AIDS, What Our Doctors Say
This article was published in our 2007 Yearbook.
When asked how they see the challenge now, almost thirty years since the first emergence of HIV, our Sister-doctors in different countries draw attention to many different facets of the virus.
More than thirty-three million people are now living with HIV, according to the latest estimates from UNAIDS. Two and a half million are children. In a single year there can be a half million new cases of HIV infection. In the same period more than two million people die from AIDS.
A great public health concern is the re-emergence of high levels of tuberculosis because many people are infected with both diseases. The World Health Organisation appeals to all of us in the health care professions to coordinate our services to address the problem of co-infection. That is easier said than done! So far, the best successes are reported from Rwanda and Kenya.
Sister Brigid Corrigan is one of our most senior consultants in the field of HIV/AIDS.
She wrote: "Back in 1998, Dr Peter Selwyn, author of Surviving the Fall said, 'We began to have the uneasy feeling of never quite being able to catch up with the AIDS epidemic: as soon as we responded effectively in one area, a new crisis emerged in another.'
"I think these words are as true today as in 1998. Even in this antiretroviral era we face an uncertain future. Certainly, antiretroviral therapy (ART) has improved the quality of life for an enormous number of people. For a physician like me there is great delight in the ability to give new life to so many adults and children suffering from HIV/AIDS. Nevertheless the challenges are very real. To mention just a few: there is the emerging resistance to available drugs, the problem of effectively preventing mother-to-child transmission and of being ever creative in our prevention campaigns.
"I am often asked by young clinicians working with me, "What did you do before ART?" To them it is like the pre-antibiotic years were to many of us in our early medical careers. The fact is that we did a lot before ART. Our quality of care, compassion, love and understanding of our patients gave many the will to cope with HIV/AIDS.
"That is the reason why many people are still with us today and have lived to avail of ART.We learned about being present to the patients, even when there was little to offer. This meant the whole range of palliative care became our domain as we fought to give quality of life for the remaining months or years of many of our patients.
"My fear would be that in the race to get as many people as possible on to ART we may lose that which we learned in our most impoverished years. In the scramble to write prescriptions for ARVs will we have the time to really listen as we did before ART?
"We must take a balanced approach to HIV/AIDS. It is clear that even the best ART programme in the world will not be able to reach everyone in need at the rate at which the HIV is still spreading.
"That means prevention campaigns must be maintained and strengthened. With the best evidence - and without apology - these should be based on the need for risk avoidance - over and above risk reduction. This is highly relevant and urgent in many of the countries where we are working."
Sister Felicia Muoneke, working in Nigeria, says the ignorance that still exists among the people about HIV/AIDS does not match the many organizations springing up every day to provide services for people affected or infected with the virus. She said, "The majority who claim to be aware of it still do not know the common basic facts about the disease. This is why there are still a lot of fears, myths and false beliefs related to issues of HIV/AIDS. Discrimination and stigma is still being perpetuated against people living with HIV/AIDS.
"Therefore the rate of denial is still high.
"The gender inequality associated with the disease is a big concern. Women are very disadvantaged in every way. They may be thrown out of the house or left to die miserable deaths. This energizes me to strategize on how to help women cope with or prevent these situations.
"But there are achievements. There is an enormous change in attitude among medical personnel towards people living with HIV/AIDS (PLWHAs). It is also encouraging to see that the youth are becoming aware of the consequences and are anxious to be included in any campaign against the scourge. Good-hearted lawyers are beginning to offer their services free of charge to defend the rights of PLWHAs."
Sister Maria Borda, writing from Tanzania, said, "I saw the first patient with AIDS in 1986. He died within two weeks of coming to hospital. We have come a long way since then. Yesterday I was counselling a patient, who is in a leadership role in his religious group. He has already improved on supportive treatment and is starting ART tomorrow. I could genuinely feel enthusiastic about the possibilities for his future. I hope that he did, too. He seems to be reorganising his priorities in life.
"There is such a crying need for people in leadership positions to understand what PLWHAs have to go through, and not be afraid to talk to them about it.
"Obviously, prevention is a far better option than treatment. Even in these rural areas, access to TV programmes of varying quality, and to pornography via the Internet and circulating CD clips, reinforce an attitude that unlimited sex is something worth aspiring towards. Sadly, this cannot be explained just by lack of education, because I have found it also among professionals. The need for behavioural change and for change in the priority of values, remains a very real concern."
Sister Marian Scena also works in Tanzania at the Faraja Center in the town of Singida. She said, "After many years doing hospital-based medicine, I took time out to train as an AIDS counsellor and now I do counselling as well as medical care, home-based care and some administration.
"What worries me most is the apparent pressure by donors and government to get as many people on ARVs as are eligible. Many people on ARVs lack an adequate diet. Also I think the Adherence Counselling isnâ€™t adequate and the medical follow-up of clients on ARVs needs to be improved.
"Thus I think our holistic service here at the Faraja Center is important as we try to complement what is lacking.
"A good thing we find is that people are becoming more open to knowing their sero-status but there is still much stigma.We need to learn more about how to empower people to help themselves as much as they are able. It is difficult not to let people become dependent on us and look to us to fulfill all their needs. The trust they have in our services provides us with the stimulus to keep going. But it is really difficult to accept that we cannot help everyone."
Sister Cecily Bourdillon is the doctor responsible for the primary health care programme at Chipini in Malawi. She wrote: "In 1992, our first home-based care volunteers were trained to assist families in caring for their sick and dying members. The volunteer was trained in the basic care of a bed-ridden patient and passed on the knowledge and skills to the members of the family. They supported the patients and family with regular visits and helped them to prepare for death. They also took care of the ever-increasing number of orphans in the village, ensuring that they went to school, had the necessary school uniform and materials, and other necessities such as mats, blankets, and soap.
"The introduction of antiretroviral therapy (ART) in the Chipini Area has changed a lot of this. Patients are referred to a group counselling session with a relative or friend present, at which they learn how ART works, possible side-effects and the rules they must keep if they are to benefit from ART. The most important one is that they must take two tablets every day for the rest of their life. Many of those taking ART have now returned to work and are living normal lives again.
"However, both patients and carers have many disappointments. Patients are still prone to opportunistic infections which, if not treated promptly, are often fatal.
"Prompt treatment is not always possible and is never easy because of distances to travel, the lack of transport (there may be only a bicycle which is not the best for a very ill person), and the unavailability of the required drugs to treat opportunistic infections and their cost.
"Some of the side effects of the drugs can be debilitating and even fatal. If nutrition is inadequate, as is so often the case since the sick person has been unable to cultivate the land for a long time, any setback is disastrous. Our challenge is to persuade our young people that prevention is better than cure. A way of life that fosters love, self control, respect and responsibility to enable them to abstain from sexual activity before marriage and be faithful in marriage is the key to a life free from HIV and its consequences."
Sister Martine Makanga worked as a surgeon at Rwanda's University Hospital in Butare. She had just finished a ten-hour session in the operating room when she took our call for her opinion on the challenge presented by AIDS now.
She told us, "The service of surgery is a busy one. Right now we have 124 patients, both children and adults.
"Of these, 85% are in traumatology due to road accidents and violence - people attacked or beaten up, or injured by grenades, gunshots, or machetes. The rest are neglected osteomyelitis, tumours, and paediatric surgery. We have a lot of neonatal congenital malformations and polymalformations. Regarding HIV, many of our patients are known to be sero-positive but many discover their status during their stay in hospital.
"The good thing is that the tests for CD4 count and antiretroviral treatment are free, but the problem is the nutritional status of most of our patients.While in hospital they have to provide their own food. For many, their families find it hard to bring food every day and to care for them as they need. Most HIV patients stay longer in hospital or have several hospitalisations. Because of immunodepression, their healing process is lengthened. Those with tumours come at a late stage for palliative surgery. What makes me sad is the lack of drugs for efficient chronic pain control and the fact that there is no palliative care programme in Rwanda as yet."
Sister Maura O'Donohue has wide experience as a consultant on HIV/AIDS, a job which has taken her to dozens of countries. She said, "My biggest concern at this point is the level of training provided to counsellors. Twenty-five years ago we were campaigning to ensure that everyone who was to be tested for HIV would have both pre-test and post-test counselling. Counsellors were given minimal training. Typically, it was a course of two week's duration at best.
"During this time they had to learn all the basic facts about HIV/AIDS, how to communicate these to patients, and how to explain the implications and complications not only of HIV/AIDS but also the testing procedure. Counsellors are faced with going through test results with somebody who is HIV positive and sometimes also with their spouse, parents or significant other. They are often involved in dealing with preparation for bereavement or actual bereavement, counselling children, as well as legal issues. Very often they lack proper facilities in which to do this highly confidential work.
"It concerns me greatly that the introduction internationally of voluntary counselling and testing (VCT) is often seen as a means for obtaining a better statistical overview of the extent of the pandemic rather than a means to meet the problems of those at risk.
"Our counsellors provide an essential service in the chain of response to HIV/AIDS. In most countries there is nobody responsible to oversee their work and provide them with support and further in-service training. This would not be accepted in any other profession.
"It is urgent that appropriate training be provided in counselling supervision. There are some excellent courses available in 'distance learning' modules. Funding agencies should be putting money into this service in every country."
Sister Carla Simmons is the doctor responsible for the Mobile HIV/AIDS Programme based in Masaka, Uganda.
She told us, "My biggest question at this time is: With the introduction of antiretroviral drugs (ARVs) what will be the effect in five years? Governments and Ministries of Health have been so eager to make ARVs available, but in my opinion, not enough has been done in the education of patients about these medications. The fact is that one must take them at the very same time every day, never missing a dose and that they have to be taken for the rest of one's life. Follow-up is essential and in many places it is not being done. In five years, I fear that the situation could be worse than it is now. Because of ARVs people are becoming less careful about risky behaviour and end up passing on HIV that is resistant to available drugs. Here at Kitovu Mobile we are in the excellent position of knowing our patients and seeing them every two weeks at our centres. This makes follow-up much easier, but it has added to our workload. We have 750 patients on ART with a staff of one doctor, two nurses and two HIV aides managing the ARV programme.
"Another concern that I have, since palliative care is my passion, is seeing patients who have a terminal condition, for example cancer of the cervix, started on ARVs. Most patients do not understand that the ARVs are not going to change their terminal condition. As I see it, they only prolong the suffering of such a patient, not to mention being a waste of valuable resources. This sounds very negative! To be positive, I have seen numerous people with HIV given a new lease of life and added precious years in which they can raise their children. This alone makes our work worthwhile."
Sister Carol Breslin was awarded a Certificate of Appreciation by the Minister for Health in Ethiopia for the work carried out over ten years at the MMM Counselling and Social Services Centre in Addis Ababa, where she is Medical Director. She said much has been done in Ethiopia to make antiretroviral drugs available at hospitals and health centres for treatment and prevention of HIV.
She said, "We should start to see greatly improved health for people living with the virus and the reduction of viral transmission by at least one important route. Equipment and staff training have been provided. My biggest concern is the issue of sustainability. Funds have not been given for maintaining equipment, for transport for clients to health institutions, for extra staff salaries, for the expensive tests needed to assess eligibility, and other costs necessary for people to benefit. I want to avoid dependency attitudes and I feel that programmes need to be assessed regularly to decide what can be supported at a local level.
"I have a problem with the fanfare claiming that millions of people have been put on ARVs, pointing out how much money has been given to capital expenditure in setting up services, while turning a blind eye to the hidden costs of providing them and expecting that local organizations will find the money for the hidden costs."