Monthly Archives: June 2011

The Ryan White Story

During the course of his short young life Ryan White changed the face of HIV and AIDS as we knew it, forever. He is, to this day, an inspiration and hero for many people living with HIV/AIDS. This is his story.

Ryan Wayne White was born December 6,1971, to Jeanne White, in Indiana (US).  Three days later, doctors confirmed that Ryan had haemophilia, a disorder in which the blood does not clot the way it should. There were treatments available and as Ryan grew up, he would suffer haemorrhages and would receive IV treatments as much as twice a week. On December 17th 1984, Ryan was battling pneumonia and had to have surgery to remove two inches off his left lung. Shortly after surgery the doctor told Ryan’s mother he had contracted the AIDS virus,[sic] through a blood transfusion. Ryan was only given 6 months to live; he was 13 years old.

Ryan didn’t accept that and continued to fight his disease with bravery. Although he tried to continue a normal life, many people were ignorant to the facts about HIV & AIDS in 1985. Ryan’s faced a lot of discrimination; his school would not allow him to attend, and the people in his town were ignorant and fearful; restaurants would throw dishes away after he dined there, and one night, even a bullet was fired into his home.

After many court battles, it was ruled in Ryan’s favour that he should be allowed to go back to school. Unfortunately, Ryan was met again with anger and ignorance; derogatory words were written on his locker, and some children were pulled out of school by their parents. Ryan faced this time with grace and dignity. Not long after Ryan, his mother Jeanne, and his sister Andrea decided to move to a smaller community in Indiana, in the hopes of being accepted by the community.

Ryan enrolled at Hamilton Heights High School, and was welcomed with open arms; greeted by students who had no only taken it upon themselves to learn about AIDS, but to educate their parents, teachers and community. Ryan said in one of his speeches “Hamilton Heights High School is proof that AIDS education in schools works”. Ryan was thrilled, and thrived in his new environment, making friends, learning to drive, attending school functions, and making the honour roll.

In the midst of it all Ryan became an educator for those who didn’t understand his incurable disease, opening the hearts and minds of millions of people, and gaining the attention of the media. He was featured on numerous notable television shows and magazines, even having his story published as a book, and a movie on ABC entitled “The Ryan White Story”.  (Read the book reviews here)! He met many famous entertainers, athletes, and public figures, who had befriended him, and they became champions for his cause.

These celebrities included Elton John, Michael Jackson, Paul Donahue, Greg Luoganis, Judith Light and many more, who offered their time and their love and support to Ryan and his family.

Ryan couldn’t believe the notoriety he received, but certainly understood the importance of being in the public eye and the impact it could bring on educating the public on AIDS. On 3rd March 1988, Ryan eloquently spoke before the national commission on AIDS. He spoke about his illness, the discrimination he faced, and always urged the need for education and compassion to all who were living with HIV/AIDS. Although Ryan had contracted his disease through blood products he never tried to separate himself from others who had contracted the disease via sexual contact, or intravenous drug use. He stressed that AIDS was not a gay disease but a human disease and one that must be fought together.

Sadly, Ryan White lost his brave fight with AIDS on 8th April 1990, Palm Sunday. He was surrounded by his loved ones, his mother Jeanne, his sister Andrea, his grandparents and his friend, Elton John. Ryan’s funeral would be among the largest in Indiana history, among the mourners were the many celebrities that befriended him. Elton John sang “Skyline Pigeon”, and helped pay for the service.

Although he is gone, Ryan’s legacy continues to live on in many ways, including The Ryan White CARE Act, US federal programs providing funds and services for over 500,000 people living HIV/AIDS each year, and the annual Ryan White Youth Conference, which brings together young people from all parts of the country to work on HIV/AIDS education in their community.

Ryan’s message of compassion, hope, love and acceptance lives on in his mother Jeanne White-Ginder who continues to speak across the country to many audiences about her remarkable son.

“Let’s fight this disease together. Help me beat the odds and together let’s educate and save the children of tomorrow.”~Ryan White 1971-1990

Each Monday, over the next 8 weeks, we’ll be posting snippets of The Ryan White Story, here’s parts 1 and 2 below.

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Bike Ability & Maintenance

  • Are you interested in being fit?
  • Would you like to reduce your carbon footprint?

If so, come and join the bike ability & maintenance Project, you may be entitled to a FREE BIKE or a bike a reduced cost.  Bikes for disabled and “crank-drive & tricycles” are also available.  The course cost is £2:00 for the entire course.

There are 3 levels to the course:

  • Level 1 (Basic skills) – Off road training, starting with safety check on bikes, on tarmac, covering  manoeuvring, signalling
  • Level 2 (Roads) – On quiet road training, out in small groups, covering all aspects of ‘on road’ cycling
  • Level 3 (Built up areas and roundabouts) – On busy road training, one instructor to two, covering all aspects of cycling and maintenance.

Places are allocated on a first come first served basis. The course will be 6 to 8 weeks from start to finish and certificates will be awarded to those who successfully complete the course

For more information please contact: Juliet or Chaz by email or telephone 0116 255 9995.

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NAT publish framework for tackling HIV in prisons

The National AIDS Trust has today published their new framework for tackling blood-borne viruses, including HIV, in prisons.

The report, entitled Tackling Blood Borne Viruses in Prison – A framework for best practice in the UK, is an update of the original framework published in 2007 which has had a significant impact on the way prisons approach blood-borne virus prevention, testing and care.

Prisoners in the UK are both disproportionately affected by and vulnerable to blood-borne viruses. The most recent figures available from the late nineties showed prisoners were 15 times more likely to be infected with HIV and over 20 times more likely to be infected with hepatitis C than the general population in the UK.

There are two key reasons for these elevated rates of infection.  Firstly, prior to imprisonment a significant number of prisoners have engaged in high-risk activity such as injecting drugs or sex work. Secondly, prisoners are known to share needles and have unprotected sex during inprisonment.

This unique and practical resource, developed in close consultation with Offender Health (based in the Department of Health), is an invaluable tool and designed for those who have responsibilities for the health and well-being of prisoners and prison staff in the UK.  These new guidelines are being launched at a time of significant change in both the health and prison landscape; from the transformation of healthcare commissioning in England to the provision of prison healthcare in Scotland moving to the NHS.

Deborah Jack, Chief Executive of NAT (National AIDS Trust), comments:

“Tackling blood-borne viruses is an important public health concern, especially in prisons where the number of people living with HIV, hepatitis B and hepatitis C are elevated.  Following this clear and practical guidance will help reduce the number of new infections in prison, encourage early diagnosis through increased testing, and ensure prisoners with blood-borne viruses have access to high quality treatment and support.  The implementation of these measures will also ensure cost-effectiveness in the long-term.”

Prof Louis Appleby, National Clinical Director for Health and Criminal Justice, comments:

“Fighting back against infection from blood borne viruses in prisons benefits not only the prisoner, but also their families and our wider community. This is why I am pleased that Offender Health has supported NAT in developing this important framework.  By increasing knowledge and awareness among both staff and prisoners, we can help identify those at risk of infection and ensure those who need it get the treatment and support they require.”

via

You can download the full report ‘Tackling Blood Borne Viruses in Prison – A framework for best practice in the UK’ here.

Contained within their ‘Our Thinking’ section, The national AIDS Trust have a section with further links where you can find priories for change and further reading on the subject, located here.

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Will New Drugs Block Hepatitis C Virus in Its Tracks?

Targeted multi-drug treatments for hepatitis C patients that could stop the virus in its tracks have come a step closer, thanks to researchers at the University of Leeds, UK.

The study by Dr Stephen Griffin and colleagues, published in the journal Hepatology, reveals how two prototype small molecule drugs, known as p7 inhibitors, can each attack different parts of the hepatitis C virus. Their findings suggest that p7 inhibitors could be a powerful way of suppressing hepatitis C, when used together with the latest generation of ‘direct-acting’ drugs.

More than 170 million people — or 3% of the world’s population — are infected with the hepatitis C virus. The virus causes severe liver disease and is a leading cause of liver-related deaths, organ transplants and liver cancer.

At the moment, patients are typically treated with PEGylated interferon alpha (IFN) and ribavirin (Rib) — drugs that work by boosting the patient’s immune system. However, the effects of these drugs can depend on the individual patient’s genetic make-up. To make matters worse, hepatitis C is often resistant to the therapy and fails to suppress the virus for long enough. The treatment is also expensive and can trigger unpleasant side effects. Many patients stop taking the drugs or do not take them when they should.

To address this, researchers are looking at new classes of drugs that work in a different way to either IFN or Rib and target the virus directly. The aim is to find groups of these ‘direct-acting’ drugs that each attack a different target, making it much, much harder for the virus to fight back.

University of Leeds researchers are focusing on drugs that target the p7 ion channel — a protein made by hepatitis C that allows the virus to continue spreading. In previous studies, Dr Griffin and colleagues worked out how the p7 ion channel could be blocked by certain types of small molecule, stopping the hepatitis C virus in its tracks. Their latest work looks at two particular classes of p7 inhibitor — adamantanes and alkylated imino-sugars — and confirms that these molecules do, indeed, attack their intended target through separate mechanisms.

The researchers used a combination of molecular modelling and lab-based experiments to study the drugs’ interaction with hepatitis C. Importantly they observed how the virus responded to the two types of drug and determined that each of these responses was very different. This suggests that the drugs would work well in combination, tackling the virus on a number of fronts.

Lead author, researcher Dr Stephen Griffin, from the University of Leeds’ School of Medicine, said: “Hepatitis C has always been an extremely difficult condition to treat effectively because the virus evolves so quickly and develops resistance to drugs that are used to treat it. This new class of small molecule drugs, the p7 inhibitors, attack the virus directly. As we have discovered here, they each do so in quite a different way which allows us to combine their effects.

“By learning how the hepatitis C virus reacts to these molecules, we can design drugs that are likely to be more effective for longer. We can also see how such drugs could be used together with other ‘direct-acting’ drugs that target alternative viral targets, rather than individually or with IFN/Rib. In other words, a similar approach to treatment as that used for HIV.”

The study was conducted in collaboration with Professor Mark Harris (University of Leeds, Faculty of Biological Sciences), Professor Colin Fishwick and Dr Richard Foster (University of Leeds, School of Chemistry) and Professor Steven Weinman (University of Kansas).

The work was funded by the UK Medical Research Council, Yorkshire Cancer Research and the University of Leeds Biomedical and Health Research Centre.

Background

Approximately 3% (170 million) of the world’s population has been infected with the hepatitis C virus (HCV). For most countries, the prevalence of HCV infection is less than 3%. The prevalence is higher (up to 15%) in some countries in Africa and Asia, and highest (over 15%) in Egypt.

Chronic hepatitis C can cause cirrhosis, liver failure, and liver cancer. Researchers estimate that at least 20 percent of patients with chronic hepatitis C develop cirrhosis. Hepatitis C is the cause of about half of cases of primary liver cancer in the developed world. Men, alcoholics, patients with cirrhosis, people over age 40, and those infected for 20 to 40 years are at higher risk of developing HCV-related liver cancer.

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Mother-to-child HIV Transmission Rates Drop in South Africa

The rates of mother-to-child HIV transmission have dropped in South Africa, according to a recent national survey.

According to the poll by the South African Medical Research Council, the rate in the country is now 3.5 per cent. (via Plus News)

Researchers said by 2015, they hope there will be no more vertical HIV transmission in the African nation.

Around 40 per cent of children born to HIV-positive mothers could contract the virus before or during birth, if they do not have access to antiretrovirals provided through public services for the prevention of mother-to-child transmission.

The survey results were released at the SA AIDS 2011 Conference, and they show a reduction of around five per cent in the transmission rates shown in previous surveys.

Recently, Zimbabwe announced pregnant women in the African country will be given free blood transfusions during delivery in a bid to prevent maternal and infant mortality, particularly among women who have HIV/AIDS.

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Media as an Alternative Tool for Addressing Health Related Stigma & Discrimination

Tune in and listen to our very own Juliet Kisob now on EAVA FM where she’ll be talking on Health Promotion Hour which starts at 4pm today.  This show engages with diverse communities and most especially Black and Minority Ethnic communities to participate in an independent radio Station called ‘EAVA FM 102.5’ Leicester Multilingual Community Radio.

This is a diverse multi-lingual radio station in Leicester on which over eight different languages are spoken including Shona, Chinese, Polish, West African Pidgin, Lingala, Somali, Swahili, the main South Asian Languages and English.

The Health Promotion Hour provides an alternative information pathway for BME communities to learn, debate, share and exchange information and interaction on health related issues including stigma and discrimination. It also provides a platform for people and professionals within the health system to meet, talk and reach out to communities that they might otherwise find difficult to engage with.

The programme covers a one hour slot on a weekly basis to cover health and well being topics. The benefit of this communication channel is that it is enabling communities to talk openly about health and well being related issues. It is also reducing the gap between professionals and communities through having question and answer sessions with different organisations and services.

You can listen to EAVA FM live online from this link:

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Mentor Training – Free at LASS

‘Mentoring’ is a one-to-one, non-judgemental relationship where a person voluntarily gives time on a regular basis to support, encourage and enable a person affected by HIV to live better with HIV and to achieve their desired aims, goals, needs and potential so they can integrate, participate and function more effectively, independently and positively within society.

LASS are offering Free Mentoring Training to any volunteer who expresses an interest and wishes to use their newly learned skills with our team.

Mentoring is a powerful personal development and empowerment tool. It is an effective way of helping people to progress and is becoming increasing popular as its potential is realised. It is a partnership between two people (mentor and mentee) normally working in a similar field or sharing similar experiences. It is a helpful relationship based upon mutual trust and respect.

The training is comprehensive, (here’s the session plan) and you will need to be available for each of the four Monday’s (10:00 til 13:00) which are scheduled, they are:

  • 22nd August
  • 29th August
  • 5th September
  • 12th September

For further information and register your interest, please contact Michael or speak with reception, on 0116 2559995

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