Tag Archives: antiretroviral therapy

Medical practice changed for ever the moment AIDS arrived

Treatment Action Campaign activists in Cape Town South Africa, June 2012

 

The AIDS epidemic has changed practically every aspect of medical practice; from the way we view the disease, the accelerated global research to discover diagnostic tools, to unprecedented drug approval processes and speedy distribution and utilisation of new drugs. To date, manifestations of the AIDS virus are dealt with in practically all branches of medicine; unlike in the early years of the epidemic when cases were largely found in medical (internal medicine) wards, and even there they were isolated from the general patient population.

For example, the first AIDS cases admitted at the Kenyatta National Hospital were isolated in small dark cubicles in selected medical wards, often much against the wishes of the consultants in charge of the wards. No one physically touched the patients and medicines were placed on a stool and pushed inside the room by a nurse who stood clear of the door. Supposedly, the patient would reach the stool from his bed and collect not only the medicines, but also something to eat. When they died the corpse was placed in a black body-bag into which copious amounts of formalin would be poured. Relatives were not permitted to take the bodies for burial lest they spread the disease; the bodies had to be incinerated.

The AIDS virus has received the greatest attention of all time in medical history, more than any other pathogen; it has been as challenging to medical doctors, biomedical and social scientists, economists, theologians and philosophers alike, the pharmaceutical industry and drug regulatory authorities. Indeed, it is the combined effort of all these disparate groups and their quest to understand the disease that finally has shed some light at the end of the tunnel. As a result, today AIDS is not as perplexing as it once used to be. Within a span of under three decades HIV infection has changed from a death sentence to a chronic disease (at least where antiretroviral drugs-ARVs are readily available). This is unprecedented in medical history. For example, it took more than 400 years from the first recorded outbreak of syphilis in Europe (1494/1495) to identification of the causative organism, Treponema pallidum, in 1905 and discovery of the first effective treatment (Salvarsan) in 1910, before the wider availability of Penicillin in 1946. In contrast, the virus that is associated with AIDS was first identified by Montagnier et al. in France in 1983 and by Gallo et al. in the US in 1984, and within less than a decade, several drugs had already received FDA approval.

AIDS hit the world in 1981, first in California and New York in the United States. In 1982 the Centers for Disease Control (CDC) coined the term ‘acquired immunodeficiency syndrome’ (AIDS) and identified four “risk factors”: male homosexuality, intravenous drug use, Haitian origin, and hemophilia A. In 1983 a major outbreak of AIDS was reported among both men and women in central Africa, prompting the CDC to add female sexual partners of men with AIDS to its list of “risk groups”. Shortly afterwards, a history of blood transfusion and  female sex workers were added to the list, and before long the disease became a threat to all segments of society—though it still remains largely concentrated within the poorer and marginalised groups.

Kenyan Aids activists in Nairobi take their campaign in support of the Global Fund to the streets. Photograph: Sidi Sarrow

Amongst the significant impacts of AIDS on the practice of medicine, three can be pointed out, namely, increased precautionary actions by health care workers, safer blood supply (for blood transfusion), and disease activism. Specifically, the AIDS epidemic has impacted on medical practice in the following ways:

Safer infection prevention practices: Today health care workers have to treat all cases as being potentially infectious, and have to observe standard guidelines on infection prevention- to guard against cross-infection between cases, as well as protecting themselves from being infected by their patients. Hospital hygiene and safe injection practices, previously neglected in much of the developing world, have become topics of global concern. There are written instructions on how to handle blood and other bodily fluids, including the use of sterile gloves when handling blood and other body fluids, double gloving during surgery and wearing of visors to protect eyes from splashed blood. Health care workers are trained on safe handling of used needles and surgical blades (sharps), and there is a total ban on re use of syringes and needles. Hospitals would normally maintain registers of needle prick (stick) occurrences and administration of post-exposure ARV prophylaxis (PEP), etc. is administered to the staff involved.

In most countries today blood for transfusion is safer than previously. There has been more careful screening of blood for transfusion- to include besides HIV and syphilis- hepatitis B, A and C, malaria and other pathogens depending on the technological capability of the lab. This has been facilitated by creation of regionalised blood transfusion centres with capability for safe storage of larger volumes, and in contact with hospitals in the catchments areas.

The major challenge in countries like Kenya is ensuring sustained flow of resources to enable supply of the essential items needed for the above. Among the complaints raised by nurses and doctors in recent months are the lack of basic supplies such as protective gear- gloves, gowns and disinfectants. We must guard against slipping back to the days when gloves, syringes and needles were reused- as late as in the early 1990s! Fear of contracting HIV infection may influence choice of career. There have been anecdotal reports that today medicine is no longer the first choice for ‘A’ students in Kenya. A 1988 survey of house officers in the US, 25 percent of all respondents reported that they would not continue to care for AIDS patients if given a choice, while another study in 1991 reported that half of all primary care providers would not treat AIDS patients if they could avoid it[i]. A more recent study shows there is reluctance on the part of some nursing students in some regions of the world to provide care for people with HIV/AIDS, and recommends that educational programmes based on research evidence must play a leading role in developing strategies to help nursing students understand and overcome such attitudes[ii]. However, many would believe things have changed a lot for the better since then.

Disease activism:  In no other disease has there been as much advocacy as in the case of AIDS. For example, the response to the continuing presence of the so-called neglected tropical diseases (NTDs) stands in sharp contrast to the unparalleled achievement in addressing the HIV epidemic. Yet these diseases continue to cause massive but hidden and silent suffering, and frequently kill, largely because the people affected or at risk have little political voice. On the other hand, as mentioned above, the first cases of AIDS reported in the US involved highly educated men, many from the upper echelons of the American society. They soon realized their plight and, through a strong well organized lobby movement, fought hard for public attention and support of the search for ‘cure’. Within less than a decade their advocacy started bearing fruit. Patients also became more active participants in the research and drug development, sometimes not just being study subjects but actively helping in design of clinical trials.

Disease activism has played a major role in quickened drug approval processes, which was almost unheard of before AIDS patients spoke up, and is now becoming common among a whole range of other illnesses, including breast cancer. Although the strongest AIDS activism in Africa has largely been concentrated in South Africa, organised groups of PLWHA in other countries are increasingly becoming vocal in demanding increased access to ARVs as well as to TB and Malaria treatment. One area of success for global disease activism is increased availability of low priced generic drugs

Spill-over effects of research: Funding for AIDS research has surpassed expenditures for any other disease. According to UNAIDS in 2008, an estimated US$15.6 billion was spent on HIV and AIDS compared to US$300 million in 1996. However, a 2010 UNAIDS report warned that flattening of global funding for HIV research may limit ability of researchers to move promising approaches forward, especially in search for a vaccine.

The extensive research connected with AIDS has spilled over into a greater understanding of other chronic diseases especially cancer. Sexually transmitted diseases research, prevention and treatment is another area that has received renewed attention since AIDS, as sexual and reproductive health gained renewed prominence. The frequency with which Tuberculosis occurs in HIV-infected persons has led [1]to a resurgence of interest in the diagnosis and treatment of this ancient disease, while advances in the treatment of HIV-associated Opportunistic Infections have benefited other immune-suppressed persons.

Scientific advances have resulted in the development of lifesaving, albeit not curative, treatment for HIV. By the end of 2009, more than 5 million persons in low- and middle-income countries were accessing Antiretroviral Therapy (ART), unimaginable just a few years before and made possible through the use of generic drugs, price reductions for brand-name drugs, and efforts of international donors through initiatives such as the US PEPFAR and the Global Fund. The increasing availability of highly effective ARVs have transformed the way doctors look at HIV infection, and so too has terminal care changed. What had previously been an emphasis on simply maintaining life is increasingly shifting to give greater weight on quality of life, comfort and individual productivity.

Research on the prevention of mother-to-child transmission of HIV has led to interventions with the potential to virtually eliminate HIV disease in children (i.e. HIV-free generation). This should have a bearing on doctors’ attitudes towards childbearing for those infected with HIV, including investigating them for infertility. Research has identified viable options for HIV prevention in intravenous drug users, such as opioid substitution therapy and needle/syringe exchange.

Diminishing stigma: There was a time when doctors that treated AIDS cases were stigmatized and shun by other colleagues and patients. Even Hospital administrations quietly tried to discourage doctors from taking too many AIDS patients because it affected their facilities’ bottom lines. Today this is generally the least of their concerns. Even Insurance companies have opened up to people living with HIV albeit at much higher premium.

Typically, it has taken AIDS to bring the existence of marginalized groups such as sexual minorities to attention in low- and middle-income countries and to highlight their vulnerability and needs. They belong to what have been referred to as the ‘most at risk populations’ (MARPs), that include sex workers and their clients, men who have sex with men (MSM), and people who inject drugs (IDUs). It is recognised that failure to address these groups will compromise efforts towards reduction of new infections. As such it is unrealistic to operate as though they do not exist!

On the future: There is no better way of summarising the future of AIDS than to quote Dr Kevin M. De Cock, Director of the Center for Global Health at CDC in Atlanta: “Inevitably, the story of HIV/AIDS ‘could not be one of final victory. It could be only the record of what had to be done, and what assuredly would have to be done again in the never-ending fight against terror and its relentless onslaughts.’ An enduring frustration is that we will not know how the story of AIDS will finally end because the epidemic will outlast us. Yet the tide can be turned with principled pragmatism, adequate resources, trust in communities, and science as our guide”


[i] Infectious Disease News, June 2011, Infectious disease and the evolution of AIDS Thirty years since “patient zero,” how the world’s worst epidemic forever changed the specialty. http://www.healio.com/infectious-disease/hiv-aids/news/print/infectious-disease-news/%7BC1A89E60-E999-4FAB-A0FE-9DC54FD9AEED%7D/Infectious-disease-and-the-evolution-of-AIDS

[ii] Pickles D., King L. & Belani I. ( 2 0 0 9 ) Attitudes of nursing students towards caring for people with HIV/AIDS: thematic literature review. Journal of Advanced Nursing 65(11), 2262–2273. doi: 10.1111/j.1365-2648.2009.05128.x

 

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What’s happening to Kenya’s first generation born HIV-positive?

Globally, there is a general lack of awareness of the health and social challenges that face the first generation of children born HIV positive; in fact, this has not been an issue of special focus. Yet the population of that group of people is not only increasing in numbers, it is also growing older. According to UNAIDS, of an estimated 390,000 children born with HIV in 2010 globally, 90 percent of them were born in 22 countries, of which 21 are in sub-Saharan Africa, the odd one out being India[1].

There is a lot of hope that with increasing access to improved PMTCT services especially the availability of the more effective antiretroviral regimen for pregnant women and their newborn babies, fewer children will be born HIV positive. Where highly active antiretroviral therapy (HAART) has been employed, the rate has reduced to below 5 percent. As a result, in 2011 UNAIDS and PEPFAR jointly launched the Global Plan towards the Elimination of New HIV Infections among Children by 2015 and Keeping Their Mothers Alive. The plan has a main focus on the 22 countries (see above).

Source: UNAIDS and PEPFAR bring together Health Ministers and partners to advance progress in ending new HIV infections in children

For many years there was a strongly held assumption that survival from birth to adolescence with HIV was so unlikely without treatment as to be negligible, and that HIV in late childhood was very unusual. The accepted view was that the majority would die before the age of five. However, there is now accumulating evidence that children born with HIV do survive into teens and adults. In Kenya, the oldest of these children are now approaching 30[2]. In Uganda it is estimated that as many as 150,000 children are already living with HIV right from childhood. In 2006, the oldest surviving of young people born with HIV in Uganda turned 23 years old, thanks to antiretroviral therapy[3]. That same year, The Aids Support Organization (Taso) had registered 4,696 ten to nineteen-year-olds living with HIV since infancy, while another 1100 young people were receiving care at the Mildmay Centre and Mulago Hospital.

A recent article by Amelia Hill[4] entitled Teenagers born with HIV tell of life under society’s radar, HIV-positive youngsters who were infected before or at birth reveal their secret lives, highlights some of the challenges faced by youngsters in the United Kingdom who were born HIV positive. These challenges include:

  • Coping with the discovery that they are HIV positive: Usually the doctors and the parents would have withheld the information until such time as it is considered “safe” to divulge the status to the child. One 18 year old describes how at nine years old a careless receptionist at his local hospital blurted his status, and his reaction to the shocking revelation: “I remember standing there, with my mother’s hand around mine, as these feelings of complete confusion and fear washed over me. I suddenly realised that the pills my mum had been giving me every day – that I had thought were sweeties – were medicine, after that day at the hospital, I would lock myself in the bathroom when my mum took them out of the cupboard. Or I’d pretend to swallow them, and then throw them away. I know I’m killing myself,” he says truthfully, but with studied nonchalance. Inconsistency in the taking of medicines has important implication to development of resistance to specific drugs by the virus.
  •  Fear of stigma: HIV-positive youngsters have expressed worry over being branded by the stigma that is attached to HIV in society. “Society forces me to live two lives, one of which – the one where I’m honest about my status – I have to keep completely secret from the other one. It’s partly because I have to live this life of shame and secrecy that I find it so hard to take my meds….I’m angry about the stigma in society that makes me have to lie about my status“. Some adolescents have admitted having considered killing themselves.

Two studies, one in Zimbabwe and the other in Uganda have specifically highlighted some of the issues facing adolescents and young adults who were born HIV positive in those countries. In Zimbabwe, a clinical study[5] has suggested that as many as one in four children may survive into adolescence without diagnosis or treatment. Of the children under HIV care in Zimbabwe during 2008, 42% were aged 10-19 years. This study has bust the long held assumptions that HIV in late childhood is very unusual, and that survival from birth to adolescence with HIV was so unlikely without treatment as to be negligible. Among the problems most commonly faced by adolescents were psychosocial issues and poor drug adherence (which is critical in keeping the ever-changing AIDS virus at bay).

The Population Council in Uganda[6]  has addressed reproductive health needs of adolescents born with HIV. It involved a sample of 732 adolescents aged 10-19 years. The study shows that these adolescents are most likely to be orphaned, hardly any of the teens and young adults born with HIV have both their parents alive, As such they are subject to the challenges that face orphans generally. They were also found to be at risk of entry into casual relationship, using no protection, and with persons whose HIV status they do not know. Most of them conceal their status to their partners. The study reports that as many as 61 percent of the sexually active adolescents surveyed said they did not use any protective method during their first time sex, and do not know the status of their current partner.

There are lots of similarities between the findings in the two Africa-based studies and the issues raised by their counterparts in the UK report. What these limited studies clearly reveal is the inadequacy of our knowledge regarding the social, psychosocial and health challenges faced by adolescents and youths born HIV positive and their guardians.

[1] UNAIDS and PEPFAR bring together Health Ministers and partners to advance progress in ending new HIV infections in children http://www.unaids.org/en/resources/presscentre/featurestories/2012/may/20120523whagp/

 [5] Rashida Ferrand,a Sara Lowe,b Barbra Whande,b et al., Survey of children accessing HIV services in a high prevalence setting: time for adolescents to count?Bull World Health Organ. 2010 June 1; 88(6): 428–434. Published online 2009 December 16. doi:  10.2471/BLT.09.066126

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