On Their Own

Recently, we had to complete a review of media on a certain topic related to management and health. My group chose to review the issue of stigmatization of HIV/AIDS patients in the media in the last 30 years. A documentary came out in 2012 that brought to the forefront what happened in the 1980’s with the United States’ response to the AIDS epidemic and specifically the response of the US government and the FDA in regard to the release of drugs to quell the rampage of the illness.

How to Survive a Plague is an extremely emotional but also thought provoking film. One of the main arguments from the leading AIDS activist group was that they wanted access to drugs that were currently being tested for efficacy sooner than the standard 7-10 year testing period that the FDA normally used. Most of those suffering from the epidemic didn’t even have nearly 6 months to live much less 6 years to wait and see the bureaucratic nightmare that was to ensure.  As I watched the documentary, and thinking of what I have been taught over the year so far, I began to reflect on how these patients were handled in hospitals, by the healthcare system, by their government and how all these sectors that are there to protect each and every one of them failed them miserably.

After approximately 7 years without a true or forceful government response, the FDA finally released the first medication to try to combat the illness. AZT was released to much avail and hope, however, with a $10,000 price tag it was out of reach for most of those effected. Within two years the majority that needed to take AZT realized how toxic it was and could not use it as a viable treatment option. Several AIDS activist groups sprang up to try to manage the response to the ongoing crisis that the government and its institutions seemed unwilling or unable to afford. These activist groups, namely ACT UP and Gay Men’s Health Crisis, began to demand a response to the according institutions that they believed were inhibiting a real response. They held accountable the NIH (National Institutes of Health), the FDA, Ronald Reagan and George Bush, personally, and the pharmaceutical companies that seemed to be delaying the much needed hastened reaction.

Imagining the crisis that they were confronting to me seems unreal. Homosexuals and those infected with HIV/AIDS in the 1980’s were already a targeted and stereotyped group and when the government’s response is nothing than I can only imagine how marginalized they felt. There are reports that hospitals and funeral homes would refuse services to those infected or who had died from HIV/AIDS. When all the institutions that are supposed to care for you don’t- what do you do? Who do you turn to? Who will make things right?

The US government proved to these groups that they were not able to manage an effective, equitable, and humane response to the crisis that was happening in the 1980s-1990s. I can only ask myself- if it were any other disease would it have been handled this way? Is it because this epidemic began in the homosexual community that it was glossed over as something that effected “them” and not “us”? Unfortunately, I do believe that that was the case. When your government will not ensure equitable treatment for you when you are ill, you turn to your fellow citizens, those who are feeling your pain or simply want to do what’s right, to do all you can to intervene and make the changes that need to be made.

ACT UP began to work directly with the pharmaceutical companies to get them to make their turnaround times quicker and ensure that they are being offered a safe and reasonably tested product. These groups had the courage to force a response but it wasn’t easy. In the midst of an epidemic there are bound to be differences in ideologies, beliefs, politics, etc. I see it as mostly fear. When everyone around you is dying and those in charge offer nothing you are on a lonesome road only with those who are just as scared as you. These breaks were seen even in the activist organizations. Lacking an empathetic response from those elected to lead, these heroes did all they could do to manage this catastrophe. It was a plague, and they were forced to take care of their own.

 

 

 -J.Nuila

 

 

 

My destiny or your responsibility???

The improvement of medicine would eventually prolong human life, but improvement of social conditions could achieve this result even more rapidly and successfully- Rudolf Virchow

The Roma community is the largest ethnic minority in Europe. According to Health World Organization in Europe live 12 to 15 million of Roma population(1)  which is characterized primarily by the situation of social exclusion and wide-ranging poverty experienced by a significant proportion of its members. Inadequate access to housing, education, employment and other needs, along with the existence of barriers to Roma access to health services and an ineffective use of these services due to their lack of adaptation and even to discrimination, all contribute to a range of avoidable injustices suffered by this community with regard to their health situation. (2)

UNDP survey data from 2004 and 2011 on Roma show that:

• One third of Roma respondents aged 35 to 54 reported health problems limiting their daily activities. (2011)     
• Approximately 20 per cent of Roma respondents were not covered by medical insurance or did not know if they were covered. (2011)
• 66 per cent of Roma said they could not afford prescription drugs compared to 29 per cent of the majority population. (2004)  
•  15 per cent of Roma children under the age of 14 are not vaccinated compared to four per cent of children from non-Roma households. (2004)(3)

In Albania the health situation of the Roma people is generally bad, due to the unhealthy environment where most of them live. Moreover, the Roma often do not have access to basic health services. High health service costs are the main obstacle towards the medical treatment of the Roma population. Only 25 percent of Roma earn enough income to buy medications. The government considers vaccination of children aged 1-14 years old as a priority measure, but in some cases, the vaccination of Roma children remains problematic particularly in the case of unregistered children or where families do not reside permanently in their place of residence. The Roma population has not enough information about the rights that the law guarantees in the field of health, including the vaccination system.(4)

This video was produced by ADRA 

But is this the destiny of Roma Community or it can be changed?

The social determinants of health influence in the health status of each population but in any case most of the health problems related to social conditions can be prevented. Governments have undertaken concrete steps to integrate Roma Community and improve their health status but the strategies should not be built for Roma Community without Roma Community. It is not only needed to offer free health care to Roma people but also to inform them about the right to health access, vaccination, family planning program. There are needed programs that foster the Roma parents to register their children in order they can access free vaccination. As Virchow says we should have a look to social conditions in order to prolong human life. It is our responsibility, not their destiny. 

E. Tresa

Bibliography

1.  Newsletter. World Health Organization; [cited 2015 Mar 9]; Available from: http://www.euro.who.int/en/health-topics/health-determinants/roma-health/newsletter

2.      Rodriguez. NS, Derecho NR. HEALTH AND THE ROMA COMMUNITY, ANALYSIS OF THE SITUATION IN EUROPE. Bulgaria, Czech Republic, Greece, Portugal, Romania, Slovakia,  Spain [Internet]. Fundación Secretariado Gitano, editor. Madrid; 2009 p. 180. Available from: 

           http://ec.europa.eu/justice/discrimination/files/roma_health_en.pdf

3.     Roma Health Report. Health status of the Roma population Data collection in the Member States of the European Union [Internet]. 2014 p. 153. Available from: http://ec.europa.eu/health/social_determinants/docs/2014_roma_health_report_en.pdf

4.     Duka R. The decade of roma inclusion. National Action Plan 2010-2015 [Internet]. Tirana, Albania; 2015. Available from: 

      http://www.al.undp.org/content/dam/albania/docs/The Decade of Roma Inclusion - National Action Plan.pdf

G is for Guatemala but also for...

Bienvenidos y Welcome a nuestro blog. Somos cuatro estudiantes de la Escuela Andaluza de Salud Pública. Somos chicas que representamos diferentes países (Albania, Estados Unidos y España) y hablaremos de diferentes temas de equidad. Dos de nosotras escribirán los posts del blog en inglés y dos en español para darles la mejor experiencia escribiendo en nuestros idiomas preferidos.

We have started this blog with an idea that is an integral part of Public Health. The word that has been used mostly in our classes here has been “equidad". When I began to think of the blog post I would make for this I started to reflect on the English translation of the word. Equality did not sound as though it encompassed the ideas that “equidad” brings. To me health equity seems to be a more appropriate translation. As much as equality seems to be a value that is ideal it seems to me that equity is what is needed.

This idea of equity reminds me of an experience I had while living in Guatemala. I was working in San Mateo Ixtatán, Huehuetenango, Guatemala. Truly, the middle of nowhere in the mountains of Guatemala near the border with Mexico. I was working as a Latin American literature and English teacher at a small school run by an NGO. I had been there for about 5 months when the administration informed the teachers that our salaries would be late that month. The transfers were late and they were in a very tight financial situation so we would have to wait up to a week to receive our monthly salary. This normally wouldn’t be an issue but I travelled to Guatemala City that month so when I found out I had about 10 Quetzales (approximately $1.30 USD) to live off of for the next week or so. Food was rather inexpensive and buying fruits and vegetables at the local market would still leave me with 5 Quetzales but what I desperately needed and did not have access to was clean drinking water. The administration had told us to drink only bottled water but a large jug of water cost 4 Quetzales and I wanted to have (a very small amount of) emergency money.

Looking back now I should have simply bought that water and just dealt with a situation if it arose but coming from the United States, it did not occur to me that drinking even a small amount of water from the tap would have repercussions. My family is originally from El Salvador and growing up I would go quite often and we were always told to be careful with the water. We would brush our teeth with it, and it would inevitably get in your mouth if you showered, but nothing would really come of it. It was always just advice like not going out with your hair wet, or wearing an extra sweater, almost like preventative advice. It was only a few days after I had drank some water to take some medicine that I started to feel ill. I have had food poisoning and other gastrointestinal ailments but NOTHING like this. My symptoms were all over the place- immense bloating, vomiting and diarrhea, essentially, the works. I initially thought I had eaten something bad and it would go away on its own.  After two weeks of worsening symptoms, the local teachers suggested I go to the local health center approximately 2 kilometers away.

I went with a colleague of mine to wait in line until I was seen. 4 hours later, I lay down on the dingy exam bed and begin to tell the medical school student ( I later found out she was in her second year of medical school and was assisting in a rotation here and had never been outside of Guatemala City) my symptoms. She quickly tells me that I am eating too much spicy food (I am not) and too much acid in my diet (not really) and that her diagnosis is that I have gastroenteritis. I tell her that that cannot be the case- the diarrhea, the bloating, it has to be something serious. She quickly gives me a Maalox generic and tells me to go home.

To make a long story short, I found out a week and a half later that I had Giardia. Giardia is a parasite that lives in the intestine that comes from drinking contaminated water. I confirmed this two ways- 1) I am lucky enough that my brother and father are both physicians. I called my brother who is an Internist and told him my symptoms and he instantly knew what I had (mostly because he gotten it also on a trip to India) and 2) A colleague of mine was worried and had me visit her father. He is a General Practitioner but was trained by USAID Epidemiologists and had a small lab in his office. After submitting a sample, sure enough he confirmed what my brother had said. (I even got to look at the darn thing)

I thought of all the situations that led me to receive my treatment to cure myself- my brother that is a physician, the community doctor who was trained by USAID, access to anti-parasitic pills, money (finally I did receive my money) to pay for those pills. I also thought about the decision that I had made that led me to where I was, but mostly, I thought about what if I didn’t have any of those resources. No access, no money, no knowledge, no ability to question.

I went back to the health center and told the medical student my actual diagnosis. She was sorry but also told me that she sees people with such worse ailments that she felt bad but was glad and also expecting me to figure it out on my own. In the end, I don’t blame her. She needs to dedicate her time and resources to helping those that do not have the knowledge or resources that I have been blessed with.

- J. Nuila