WINTER 2014 – FREE Please take a copy
-SPECIAL REPORTHIV DISCRIMINATION IN CHINA
ALSO INSIDE • Sexual health in Politics | World News | Positive East
POSITIVENATION.co.uk
Positive Nation | 1
2 | Positive Nation
POSITIVENATION.co.uk
REGULARS
FEATURES
Foreword – Daniel Charcharos
4
World News Newly Diagnosed - Early treatment
6
Special Report: HIV discrimination in China
12
22
Positive East - Age of Austerity
17
Sexual Health & The Election 2015
20
20
Special report on HIV discrimination in China
12 17 POSITIVENATION.co.uk
If you have a story or are interesting in writing for Positive Nation, contact positivenationeditor@yahoo.com
Positive Nation | 3
FOREWORD: DANIEL CHARCHAROS
Welcome
to Positive Nation Dear Readers, Well here we are at the end of 2014 just after on World AIDS Day. It has occurred to me that we always hear similar things around this time of year regarding HIV/AIDS - ‘a cure is just around the corner’, ‘HIV drugs becoming more successful’. Those kinds of things lead one to believe that it is all good news. However, then you read stories like the Arizona pastor who thinks AIDS would be over if only we killed every Editor: Daniel Charcharos Gay person, or the Ugandan Prime Minister saying that people should put their genitals in padlocks to avoid getting AIDS. By the time you read this someone from UKIP will have said something else horrible about HIV/AIDS and you once again realise that we’ve still got a long way to go in the fight. I can’t wait for the day when we don’t have to mention stories such as the above. I hope you all enjoy the issue and remember any feedback is always welcome! I want to give a huge ‘thank you’ to Gary Wood, who wrote the article on HIV discrimination in China. Accurate information on HIV/AIDS in China has been really hard to come by and we’re delighted to catch a glimpse of what it’s like to be HIV-positive in China. Take care,
I couldn’t care less if the guy I’m guarding has HIV. I’m going to slam him anyway. ~Dennis Rodman
Daniel and the PN Team with love.
DISCLAIMER © 2014. Positive Nation is published by Talent Media Ltd. Copyright of all images and articles remains with the publisher. All other rights recognised. We cannot accept responsibility for any unsolicited text, photographs or illustrations. Views expressed by individual contributors are not necessarily those of the publishers. The mention,
Editor – Daniel Charcharos
appearance or likeness of any person or organisation in articles or advertising in Positive Nation is not to be taken as any indication of health, HIV status or lifestyle.
Sub Editor - Robert Ingham Publishing & Advertising Director – Darren Waite Art Editor – Daniel Charcharos
4 | Positive Nation
Published by: Talent Media Ltd, Studio N, Container City 2, Trinity Buoy Wharf, London, E14 0FN Tel: 020 3697 9371. Fax: 020 3070 0017. Email: info@talentmedia.org Website: www.positivenation.co.uk
Respect the enviroment, please recycle this publication. POSITIVENATION.co.uk
POSITIVENATION.co.uk
Positive Nation | 5
UK study finds PreExposure Prophylaxis (PrEP) “highly protective against HIV” for gay men The Medical Research Council has reported that its PROUD trial is to be fast-tracked after confirming that preexposure prophylaxis (PrEP) is highly protective as a tool against HIV for gay men. PrEP involves HIV-negative people taking antiretroviral drugs (that are usually used to treat HIV) to reduce their risk of becoming infected if they are at high risk of exposure to the virus. Placebo controlled trials have already shown that PrEP works to protect against acquiring HIV and that protection is best when the daily tablet is taken consistently. Researchers prescribed Truvada, an antiretroviral used to treat HIV, to 407 men taking part in the study in Brighton, London, York, Manchester, Birmingham and Sheffield. A further 138 men who had been waiting to start the course are now to be offered the drug immediately. Dr Rosemary Gillespie, Chief Executive at Terrence Higgins Trust, said: “This is potentially the most exciting
development in HIV prevention in some years. For a trial to be fast-tracked in this way is rare, and shows just how much confidence researchers have in PrEP as a tool to reduce the spread of HIV. A number of questions remain unanswered, including how PrEP will be made available and who will be able to access it. The PROUD study has accelerated their part of the process. We will now be looking to the NHS to match that pace, and act swiftly to ensure those most at risk of HIV in the UK can access PrEP.” A couple of weeks later, in what researchers called a “major breakthrough in the fight against HIV”, a separate French trial of PrEP has found that it also led to “a very significant reduction” in the risk of infection amongst men who took it while they had sex. HIV charities are now urging the NHS to urgently consider introducing PrEP, which is already available to many gay men in the USA. If the pill is taken on an
‘The End of AIDS?’ Science Museum display developed with National Children’s Bureau This World AIDS Day, the National Children’s Bureau announced the outcome of some excellent work by young people, resulting from a collaboration between the Science Museum and the Children and Young People HIV Network. Young people living with HIV in the London area have been involved in creating content for a thought-provoking new display case called ‘The End of AIDS?’ The case will be seen by thousands of visitors to the museum’s popular ‘Who Am I?’ gallery, which engages audiences aged 11+ in learning about the human body, brain and genes. The focal point of the display is an
6 | Positive Nation
animation created by the young people, explaining aspects of HIV science through the story of a young person growing up with HIV. The story highlights how massive advances in HIV testing, treatment and prevention during the young people’s lifetimes enable individuals in 2014 to live healthy, fulfilling lives with HIV. The whole display has been informed by the group’s input, and includes some of their personal objects. ‘The End of AIDS?’ will be on show for 3-4 months from 28 November at the Science Museum in South Kensington, London. The case is funded by the Wellcome Trust. For more information, please visit the Science Museum’s website.
on-demand basis, rather than daily, it could come at a significantly lower cost to the health service. Yusef Azad, director of policy and campaigns at the National AIDS Trust, said of the results: “This announcement from the ANRS IPERGAY trial is another exciting piece of news in the growing and powerful evidence based on the effectiveness of PrEP. It is especially important if it suggests that PrEP might work well when taken only around the time of sex rather than daily - that could be good news for costs. We will now need to look at how such ‘intermittent PrEP’ works in a ‘real life’ setting rather than a placebo-controlled trial. This news adds to the urgency of the NHS deciding how to introduce PrEP effectively to reduce the current record numbers of gay and bisexual men, and others at high risk, being diagnosed with HIV in the UK.”
NAT survey highlights ignorance A survey has found that 28% of British people believe that HIV can be caught from a toilet seat. The survey, carried out by Ipsos MORI for National AIDS Trust, of 1,992 people over the age of 16 was published on World AIDS Day. The research also found that 28% of people believe the virus can be caught through kissing, sharing a glass, spit, coughs and sneezes – with just 45% of people aware of the genuine ways HIV can be contracted. Even more shockingly, 17% of people aren’t aware that HIV can be passed on by having heterosexual sex without a condom, while a further 19% believe the same for gay sex between men.
POSITIVENATION.co.uk
Scientists use stem cells to create HIV resistance November marked the beginning of a month-long, music-led campaign leading up to World AIDS Day in the US from CocaCola and (RED). This is the third year that Coke has partnered with the organisation to raise awareness about HIV/AIDS in Africa. Joe Belliotti, head of music at Coca-Cola, stressed the importance of this year’s campaign because 2013 was the first year that more people had access to medication than those who were newly infected with HIV. In 2012, Coke built a social game to support World AIDS Day and last year used a dance-themed campaign.
“We’re stepping up greatly our efforts because this year is really the tipping point in the fight against AIDS, and we’re going to use the power of music to bring that message to a teenage millennial audience around the world,” Belliotti said. The new push gives music fans access to four exclusive songs from Queen, Aloe Blacc, OneRepublic, Wyclef Jean and Avicii. Each week a new song will be available on iTunes. Proceeds from the song downloads will be donated to (RED). The first song available this week is an unreleased track from Queen (featuring Freddie Mercury, who died of HIV in 1991)
called “Let Me in Your Heart Again.” In addition to the exclusive music, the soda giant is rolling out an online platform (powered by Omaze) that enables consumers to donate to the cause. There’s also a contest, with prizes such as music festival tickets and VIP access to concerts. Coke originally pledged $5 million to (RED) in 2011, adding an additional $2 million donation this year.
Obama marks World AIDS Day President Barack Obama marked World AIDS Day in a proclamation released by the White House, vowing to continue efforts to combat the disease. “In the face of a disease that extends far beyond our borders, the United States remains committed to leading the world in the fight against HIV/AIDS and ensuring no one is left behind,” Obama stated. Although he noted the progress that has been made to reduce the rate of HIV and
AIDS infection, the president said more work must be done. “Despite these gains, too many with HIV/ AIDS, especially young Americans, still do not know they are infected; too many communities, including gay and bisexual men, African Americans, and Hispanics remain disproportionately impacted; and too many individuals continue to bear the burden of discrimination and stigma,” he said. “I urge the Governors of the States and the Commonwealth of Puerto Rico,
officials of the other territories subject to the jurisdiction of the United States, and the American people to join me in appropriate activities to remember those who have lost their lives to AIDS and to provide support and comfort to those living with this disease.” World AIDS Day is a joint effort by the United Nations and World Health Organisation to combat HIV/AIDS.
Arizona pastor predicts ‘AIDS-free Christmas’ if all gays are killed A Baptist pastor in Tempe, Arizona called for the mass extermination of LGBT people on Sunday in a sermon entitled “AIDS: The Judgement of God.”
of them have committed an abomination: they shall surely be put to death. Their blood shall be upon them,” Anderson read aloud.
In the sermon, which was uploaded to YouTube on Monday from Faithful Word Baptist Church, Pastor Steven Anderson said that God has ordered in the scriptures that gays should be killed, and that if humanity wants to have an “AIDS-free world by Christmas,” he said, that’s what should be done.
“And that, my friend, is the cure for AIDS,” he said. “It was right there in the Bible all along — and they’re out spending billions of dollars in research and testing. It’s curable — right there. Because if you executed the homos like God recommends, you wouldn’t have all this AIDS running rampant.”
“Turn to Leviticus 20:13,” he says in the video, “because I actually discovered the cure for AIDS. If a man also lie with mankind, as he lieth with a woman, both
At another point in his sermon, Anderson had a foot-stomping, shouting tantrum about the idea that people can be LGBT and Christian. There will never be any gays
POSITIVENATION.co.uk
in his church, he said, not ever, ever, ever. “No homos will ever be allowed in this church as long as I am pastor here,” he insisted. “Never! Say ‘You’re crazy.’ No, you’re crazy if you think that there’s something wrong with my ‘no homo’ policy.” According to the website IfYouOnlyNews. com, Anderson’s sermons have stirred controversy in the past. He has run afoul of the Secret Service after openly praying in 2009 and again this year for the death of President Barack Obama.
Positive Nation | 7
@PositivelyUK
Championing the rights of people living with HIV
positivelyuk.org Free downloads: - The Pregnancy Journey with HIV - Making the most of your GP - Positively UK Magazine info@positivelyuk.org 020 7713 0444
www.positivelyuk.org
8 | Positive Nation
POSITIVENATION.co.uk
Yemen: HIV Patients Denied Health Care
People with HIV and AIDS are routinely denied care within Yemen’s health care system, Human Rights Watch said in an October 2014 letter to the Yemeni minister of health. Yemeni authorities should end discrimination by health workers against people with HIV and ensure patients’ equal access to healthcare services, as mandated by a 2009 law. “Kicking sick people out of the hospital because they have HIV is not just discriminatory, it’s cruel,” said Nadim Houry, deputy Middle East and North Africa director of Human Rights Watch. “The Health Ministry should enforce Yemen’s law barring discrimination against people who are HIV-positive.” In September 2014, Human Rights Watch spoke to seven HIV-positive individuals in Yemen who said that they had been repeatedly refused treatment once medical staff found out their HIV status. Six health workers told Human Rights Watch they believed such discrimination was common in state-run healthcare facilities. A 2009 law provides free health services to people with HIV and imposes criminal penalties on health workers who discriminate against them. Three health professionals told Human
Rights Watch that on August 15, 2014, at the state-run Republican Hospital in Sanaa, a doctor refused to treat a patient suffering from seizures when she learned the patient was HIV-positive. In front of other patients and staff, the doctor shouted that the patient had HIV and ordered that she be removed from the hospital. The doctor also demanded that the patient’s husband be arrested for having withheld this information; hospital staff held him for 45 minutes before releasing him with the warning that he should “not cause any trouble in the future.” A HIV-positive woman told Human Rights Watch that in 2012, doctors at a private clinic forced her to leave while she was in labour and in need of a caesarean section because they learned of her HIV status. Several other individuals living with HIV described being denied care at public and private health facilities in Sanaa and Taizz for a range of different ailments. Dr. Ahmed al-Garati, who treats individuals with HIV in Sanaa’s Republican Hospital, expressed concern about the unwillingness of others to treat such patients. “We provide our employees with all the necessary safety equipment so this has nothing to do with the risk,” he said. “It is pure discrimination. The same healthcare workers have no problem dealing with patients who have other diseases that carry a higher risk of infection. The biggest problem is that no staff members are ever held accountable for discriminating against patients with HIV.”
Because of difficulties getting treatment at state-run healthcare facilities, people living with HIV frequently turn to private facilities. Patients told Human Rights Watch they were charged higher fees for medication and treatment. “Given that we are unable to use public facilities, some doctors take advantage of the situation and charge us double the normal medical cost that they charge other patients at the same facility for the same procedure,” one person with HIV said. The right to the highest attainable standard of health is guaranteed under the International Covenant on Economic, Social and Cultural Rights (ICESCR), which Yemen ratified in 1987. International law provides that access to health care must be on a non-discriminatory basis and discrimination on any grounds is prohibited. The United Nations Committee on Economic, Social and Cultural Rights, which monitors compliance with the covenant, says governments “should ensure that appropriate goods, services and information for the prevention and treatment of STDs [sexually transmitted diseases], including HIV/AIDS, are available and accessible.” The United Nations agency UNAIDS has estimated that there were about 6,000 people living with HIV in Yemen in 2013. A 2013 UNAIDS report cited advances in the government’s political commitment to addressing the issue, but found that HIV/AIDS policies were badly disrupted by donor funding cuts after the political crisis of 2011.
Giant pink condom lowered onto Sydney city centre landmark to launch new campaign against HIV in Australia Workers Sydney’s city centre in November were met with the unusual spectacle of a 60 foot high bright pink condom which appeared over a landmark heritage-listed obelisk.
Nicholas Parkhill from the AIDS Council of New South Wales (ACON) said: ‘This installation is sure to create lots of interest as we’ve selected a very visible icon in a high traffic area.’
The giant condom is part of a new awareness campaign about HIV, run by ACON, a health promotion organisation with a central focus on HIV/AIDS, lesbian, gay, bisexual and transgender health in Australia.
Parkhill said while new drugs were able to help in the fight against HIV, the virus which causes AIDS, condoms were still crucial in stopping the spread of the disease, particularly among gay men. We need to constantly find new ways to
POSITIVENATION.co.uk
promote this message, especially in the lead up to World AIDS Day,’ he added. The number of new HIV cases in Australia is at its highest level in 20 years with 1,235 new cases diagnosed in 2013. The giant condom reads ‘Test more + treat early + stay safe = ending HIV.’ Positive Nation | 9
Use your car to support people living with HIV Volunteer Drivers Wanted If you own a car and can spare 2-3 hours, one Sunday a month – then volunteer to drive for The Food Chain. We provide nutritional meals each and every Sunday for hundreds of people in London living with HIV. We rely entirely on volunteers to cook and deliver those meals – and right now we need more drivers. Mileage will be paid.
Visit
www.foodchain.org.uk/volunteer or call 020 7354 0333 for more information 10 | Positive Nation
The Food Chain (UK) Ltd – registered charity number 1003014
POSITIVENATION.co.uk
Thirty exhibition opened on World AIDS Day in Wellington
Thirty is a moving image exhibition that illuminates the early years of HIV/ AIDS which explores the changing community attitudes and responses, and acknowledges those that have passed. The exhibition endeavours to break stereotypes and, in particular, to give voice to the underrepresented story of women and AIDS. Thirty is composed of a range of historical and contemporary moving images, presented alongside panels from the New Zealand AIDS Memorial Quilt. The exhibition encompasses a range of genres including: current affairs footage, advertising, documentaries, awareness campaigns, artistic interpretations, and personal responses to HIV/AIDS. The Thirty exhibition is based on the acclaimed exhibition, 30, presented in Wellington earlier in 2014. Both exhibitions commemorate 2014 as marking the 30th anniversary of the first death of a person in New Zealand with an AIDS related illness.
The Auckland manifestation of Thirty develops upon the material presented in 30 in Wellington by incorporating an expanded segment on women and AIDS. This complements and contrasts with the original exhibition materials. Over recent months Ngā Taonga Sound & Vision staff have been working with producers and organisations that have commissioned and produced material addressing women’s experiences of HIV/ AIDS to acquisition this content into the collection (where it will be preserved for future researchers). According to Ngā Taonga Sound & Vision Programme Developer, Paula Booker, these new items address a gap in the archive’s collections holdings in this area, as well as larger social and media biases. “The early epidemic of HIV infection and AIDS in New Zealand was highly concentrated among gay men (and they are still the group most at risk of contracting HIV in New Zealand),” says Booker. “Accordingly, the majority of high profile education and health campaigns have been targeted to this group. However, New Zealand HIV statistics show that an
increasing proportion of new infections are between heterosexual individuals. The commonly held stereotype that HIV only occurs in gay men must be reconsidered, so that other HIV positive men, women and children can receive timely testing, diagnoses and support to live healthy lives with HIV.” One of the newly-deposited films that will feature in ‘Thirty is Altered Lives’ (2012, produced by Bronwen Gray). This is a composite of four short animated films about women with HIV/AIDS, based on true stories told to the producer. Another is ‘For the Love of a Child: When Do you Tell a Child they are HIV Positive?’, a digital storytelling clip produced by Positive Women in 2009. This material is positioned in conversation with historical footage, including news stories dating back to 1984. The Thirty exhibition is presented in association with Positive Women, the Auckland Pride Festival, and the New Zealand AIDS Foundation. The exhibition runs until 27 February 2015.
Airline, Spring Airlines, pays out to AIDS passengers in China A budget airline Spring Airlines has paid compensation to passengers not allowed on a flight because they have AIDS. The carrier has agreed to pay a total of 87,000 yuan (US$14,205) to two people with HIV/AIDS and an AIDS prevention volunteer. This followed mediation by the Dongling District Court in Shenyang, capital of northeast China’s Liaoning Province. The plaintiffs filed a lawsuit after being told that they could not board a flight from Shenyang as two had HIV/AIDS. They accused Spring Airlines of discrimination against people with HIV/ AIDS, and sought compensation and an apology. An agreement was reached in November and the lawsuit was
POSITIVENATION.co.uk
withdrawn the following day. The two people with HIV/AIDS each receive 36,000 yuan, with the rest paid to the volunteer. On July 26, HIV/AIDS worker Cheng Shuaishuai discovered that Spring Airlines’ regulations state that it does not accept people with AIDS on its flights. Two days later, Cheng accompanied two people with AIDS to Xiantao International Airport in Shenyang, traveling to Shijiazhuang in north China’s Hebei Province. When they told Spring Airlines staff that they had HIV/AIDS, they were not allowed on the flight and their tickets cancelled. The case led to heated debate
among AIDS and charity groups and the public, with Spring Airlines responding to criticism. Spring Airlines President Wang Zhenghua said HIV/AIDS patients can take the airline’s flights and that the incident was down to a few members of staff “behaving nervously.” Carriers should not discriminate, but HIV/AIDS patients should also keep a “low profile” about their condition when boarding, added Wang. Positive Nation | 11
FEATURE: CHINA
HIV DISCRIMINATION IN CHINA
A growing concern, by Gary Wood “I really feel that there is a change going on... I know that for top state leaders in China today, AIDS is on the agenda” Peter Piot, Executive Director of UNAIDS The current situation It’s almost 30 years since the first AIDS related death was recorded in China. Since then, we have witnessed the blood selling scandal of the 90s, where companies in Henan bought blood using unsterilized and HIV tainted equipment, right through to the first successful discrimination claim in 2013, after an education bureau refused to employ an individual on account of their HIV status. 12 | Positive Nation
HIV/AIDS is no longer seen by the majority as a ‘Foreign Disease’ and is now considered a growing issue within China, a country of almost 1.4 billion people and with a current estimate of 780,000 living with the infection. Out of those 780,000: • • • • •
Heterosexual transmission accounts for 43% of infections Intravenous drug use 32% Homosexual transmission 16% Commercial plasma donation and infected blood products 8% Mother to Child transmission 1%
Although 780,000 people represent less than 0.1% of the population, an alarming 34,157 new cases were reported between January and October of 2012 alone. The increasing presence of HIV was highlighted in a 2010 study carried out by the Centre for Disease Control
(CDC) with a sharp increase of HIV infections in men over 60, rising from 483 in 2005 up to 3,031 in 2010, as well as 1,252 students testing positive for the illness between January and October 2012, accounting for 21% of all student cases. However, whether this rise is due to increased testing or growing promiscuity is unknown. According to UN data from 2009, “China’s HIV epidemic remains one of low prevalence overall, but with pockets of high infection rate among specific sub-populations and certain localities.” To begin with locations, a large amount of the nearly estimated 800,000 infected people reside in 6 of China’s 33 provinces; Xinjiang, Sichuan, Yunan, Guangxi, Henan and Guangdong. As well as these locations, the classified ‘High risk groups’ for HIV infection are as follows; Intravenous Drug Users (IDU’s), Commercial Sex workers POSITIVENATION.co.uk
FEATURE: CHINA
HIV status had a substantial impact on their relationships with relatives and friends, and just under a third claimed it had a substantial impact on their relationships with neighbours. Another study, conducted by UNAIDS in 2009, found 76% of HIV positive respondents claimed their family members had experienced discrimination involving areas such as employment, education and forced HIV testing.
(CSWS), Drug using Commercial Sex workers, Men who have sex with Men (MSM) and Migrant workers.
HIV Discrimination in China On 1st December 2003 at Beijing’s Ditan Hospital, Wen Jia Bao became the first ever Premier of China to be photographed shaking hands and conversing with HIV/AIDS patients as part of China’s determination to fight the epidemic. Premier Wen discussed the countries plans to combat HIV related discrimination, increase funding for medical treatment, as well as strengthen international co-operation on fighting the disease. This was repeated almost a decade later when President Xi Jin Ping visited a center in Beijing which provides drug maintenance for highrisk AIDS patients. He stressed that the disease was not only a medical issue but also an issue which concerned wider society, stating people from all sections of society need to come together in support for those living with the disease. The Chinese Government has also drafted policies, both in 2004 and 2006, that protect people with HIV/AIDS from receiving discrimination when in need of medical treatment, along with the lifting of a ban that refused tourists living with HIV/AIDS from entering the country. However, problems of
POSITIVENATION.co.uk
discrimination are still present within Chinese society and include social stigma, refusal of medical treatment and employment discrimination to name only three.
On 1st December 2003 at Beijing’s Ditan Hospital, Wen Jia Bao became the first ever Premier of China to be photographed shaking hands and conversing with HIV/ AIDS patients The social stigma towards those living with the disease appears to extend from the general public over to the infected person’s relationships with family members and friends. A joint study by Beijing Normal University and The University of Toronto found half of the respondents believed their
The issue in China is one linked to ‘Mianzi’ and generally translates into English as ‘Face’. Within Chinese society ‘Mianzi’ is something of extreme high importance, which for a loose description is concerned with the way one is perceived in the eyes of others concerning social status and reputation. The fact that HIV/AIDS infection has a tendency to be pigeonholed with illegal activities such as prostitution or drug abuse could be one factor leading towards such negative opinions held by members of the public. As one can imagine, when HIV/AIDS infection is associated with such conduct, having the condition or been seen with someone who is known to have the condition, could result in a tremendous loss of face. “Students are taught that only gay or immoral people with multiple sexual partners get infected” says Meng Lin, who runs the China Alliance for People Living with HIV/AIDS. A study carried out by China AIDS Media Partnership (CHAMP) across 6 major Chinese cities found that out of the 6000 people questioned, 32% of them believed infected people deserved their condition due to drug abuse or sexual behaviour, almost half would not eat with someone carrying the virus and 30% of those surveyed believed infected children should not attend the same schools as uninfected children. Chinese Health Minister Chen Zhu stressed that such discrimination and prejudice towards HIV makes people reluctant to get tested and further aggravates the spread of the virus. The 2004 Act on the Prevention and
Positive Nation | 13
FEATURE: CHINA
Treatment of Infectious Diseases and the 2006 Regulation on the Prevention and Treatment of HIV/AIDS have been seen as steps towards protecting the legal rights of those infected. However, refusal of treatment and poor service towards patients with HIV/AIDS still exists. According to research by The Chinese CDC & International Labour Office (ILO), a number of their 103 respondents declared hospitals in China are purely driven by profit, and in an environment where patients have freedom of choice, hospital management are afraid that they, general patients, may go elsewhere should they be aware that the hospital is providing care for HIV/AIDS infected people. When those refused treatment eventually find care, it is often in lower level hospitals where their rights are not fully protected. This previous example of discrimination is one reason which can lead to HIV infected individuals lying about their status in order to access treatment. For example, in 2012 the regional director of non-profit organisation
14 | Positive Nation
‘China Alliance of People Living with HIV/AIDS’, posted on Weibo (China’s answer to Twitter) about an individual living in Tianjin who lied about their infection in order to receive treatment for Lung Cancer after several hospitals refused to treat him. This resulted in a backlash from bloggers against the HIV community, with one user commenting: ‘Good intentions do not justify his act which puts medical staff at risk.’ Yet in a life or death situation, what choice do people have when desperately seeking health care? This is clearly a matter of desperate times calling for desperate measures when an individual is suffering from a fatal disease and has nowhere to turn. Out of 658 health care workers which were questioned in Guangzhou, 20% of them were unwilling to provide medical services for People Living with HIV/AIDS (PLWHA), as well as another study finding that only 35% of 343 quasimedical staff was willing to treat a hand injury on a PLWHA. Wu Zunyou, Director of China’s National Centre for
AIDS and Sexually transmitted diseases Control, condemned the denial of treatment stating that it costs lives and is groundless due to the fact that no medics have ever been infected after performing medical treatment on a patient with the virus. Moving on, the final area to be reviewed in this article is employment discrimination. Holding down steady work is one of the fundamentals many of us seek in life; the sense of doing something productive, worthwhile and providing for our families. However, having your employment terminated and your chances of finding reemployment being severely reduced, deems to be one of the most soul destroying situations an individual could face. This is one concern the Chinese media has been trying to tackle head on with past studies attempting to understand and combat the issue. A 2007 survey by the Government ran ‘Chinese University of Law and Political Science’ found that, out of
POSITIVENATION.co.uk
FEATURE: CHINA
Five years ago I would have said that China is 10 years behind other countries and not taking full advantage of lessons learned… now I would say China is becoming one of the leaders in the global HIV response 1,000 respondents, 48.8% believed people with HIV should not be given equal employment rights. Out of the 200 business managers interviewed, 65% believed people with HIV should not have equal employment opportunities as well as stating in their job advertisements that prospective employees must be free from HIV/ AIDS. According to Liu Kangmai, Party Chief for the National Center for AIDS/ STD Control and Prevention, over 85% of PLWHA have lost their jobs due to the illness. Other issues in this predicament extend to forced resignations, denial of promotions and restricted access to company health insurance. “More work needs to be done to improve laws and regulations on health discrimination,” said Liu, “however, we should admit that it might be a long process.”
What does the future hold? Although HIV discrimination is a grim issue in China, there have been landmark measures put into operation by the Government to help support those living with the virus. To begin with, in 1999 the Chinese Government implemented the Highly Active POSITIVENATION.co.uk
Anti-Retroviral Therapy (HAART) programme which provides free treatment for individuals living with AIDS. The UN reported that by 2011, 76% of those infected were now able to access HIV treatment. Although initially slow to take action towards the problem of HIV/AIDS, the Chinese Government has since strengthened its response, receiving praise from WHO HIV/AIDS Technical Officer Katharine Poundstone, who said: “Five years ago I would have said that China is 10 years behind other countries and not taking full advantage of lessons learned… now I would say China is becoming one of the leaders in the global HIV response.” However, more work needs to be done. Firstly, there is a growing need to ensure that discrimination claims are followed up with and punishments are delivered towards the perpetrators. It is hoped that such punishments may curb this common trend. Secondly, more education and publicity campaigns need to be rolled out nationwide in order to combat stigma and stereotypes towards those with the virus. Previous studies from The Open AIDS Journal have found public education campaigns, ran by provincial governments, seem to improve the acceptance of PLWHA. Overall, lest we forget that HIV discrimination is not unique to China, but a worldwide issue. This is an ongoing battle that requires the work of everyone to ensure that the discrimination, transmission and hardship associated with this illness, is brought to an end. If you would like more information about HIV voluntary work in China, visit the following web-sites: http://www.vso.org.uk/ http://www.barryandmartin.org/ http://www.chfaidsorphans.com/ References for this article can be provided on request. Please email: garywoodgac@hotmail.com Gary Wood.
References in no particular order: China.org (2012) HIV discrimination under fire. Available at: http://www.china.org.cn/china/2012-11/22/ content_27192275.htm (Accessed: 10th October 2014) China.org (2010) HIV-positive still face job discrimination. Available at: http://www.china.org.cn/china/2010-12/02/ content_21465310.htm (Accessed: 15th October 2014) South China Morning Post (2012) Man hides HIV status to obtain surgery. Available at: http://www.scmp.com/ news/china/article/1087473/man-hides-hiv-status-obtainsurgery (Accessed: 28th October 2014) Champ and Partners (2008) AIDS-Related Knowledge, Attitudes, Behavior, and Practices: A Survey of 6 Chinese Cities. Available at: http://www.unaids.org. cn/uploadfiles/20080925150557.pdf (Accessed: 2nd Novermber 2014) The STD and AIDS Prevention and Control Center of the Chinese Center for Disease Control and Prevention, The International Labour Organization (No Date) Discrimination against People Living with HIV within Healthcare Settings in China. Available at: http://www. ilo.org/wcmsp5/groups/public/---ed_protect/---protrav/--ilo_aids/documents/publication/wcms_155950.pdf (Accessed: 9th November 2014) Mandal, A. (2010) China lifts ban on tourists suffering from HIV/AIDS. Available at: http://www.news-medical. net/news/20100428/China-lifts-ban-on-tourists-sufferingfrom-HIVAIDS.aspx (Accessed: 3rd November 2014) Bradley, S. E. K., Clark, B. Y., Hardee, K., Manchester, T., Shen, Z., Qi, A. & Yuan, V. (2009) ‘HIV and AIDS Stigma and Discrimination in China: Results from a National Survey’, Asia-Pacific Population Journal [Online]. Available at: http://engagedscholarship.csuohio.edu/cgi/viewcontent. cgi?article=1706&context=urban_facpub (Accessed: 29th October 2014) China.org.cn (No Date) Premier’s Handshake Highlights Fight Against AIDS. Available at: http://www.china.org. cn/english/2003/Dec/81324.htm (Accessed: 27th October 2014) CCTV (2012) Xi Jinping: AIDS prevention concerns wider society. Available at: http://english.cntv.cn/program/ newsupdate/20121130/108204.shtml (Accessed: 29th October 2014) Medwiser (No Date) Aids in China. Available at: http:// www.medwiser.org/hiv-aids/around-the-world/aids-inchina/ (Accessed: 27th October 2014) Paddock, C. (2011) HIV/AIDS Rising Rapidly In China’s General Population. Available at: http://www. medicalnewstoday.com/articles/238442.php (Accessed: 30th October 2014) UN AIDS (No Date) Key Data http://www.unaids.org.cn/ en/index/page.asp?id=178&class=2&classname=Key+Data (Accessed: 6th November) He, N., Lin, P., Wang, C. H. & Zhu, T. F. (2005) ‘High risk populations and HIV-1 infection in China’ Cell Research [Online]. Available from: http://www.nature.com/cr/ journal/v15/n11/full/7290358a.html (Accessed: 3rd November 2014) Arnade, L., Guo, R. Hu, R. & Wan, Y. (2009) ‘Discrimination against people with HIV/AIDS in China’, The Equal Rights Review, (4), Pp. 15 – 25. UN AIDS (2009) The China Stigma Index Report. Available at: http://data.unaids.org/Pub/report/2009/20091127_ stigmaindexsummaryreport_en.pdf (Accessed: 1st November 2014) Xinhua (2012) AIDS deaths rise in China. Available at: http://www.chinadaily.com.cn/china/2012-11/30/ content_15973912.htm (Accessed: 2nd November 2014) Chian Daily (2012) AIDS is not to be feared, but ignorance and prejudice are. Available at: http://usa.chinadaily.com. cn/opinion/2012-12/04/content_15985124.htm Accessed: 28th October 2014) Jiang, S. (2013) Campaigners say discrimination hinders China’s AIDS fight. Available at: http://edition.cnn. com/2013/12/09/world/asia/china-aids-discrimination/ index.html (Accessed: 4th November) China Labour bulletin (2013) Teacher with HIV receives 45,000 yuan in employment discrimination case. Available at: http://www.clb.org.hk/en/content/teacher-hiv-receives45000-yuan-employment-discrimination-case (Accessed: 5th November 2014)
Positive Nation | 15
16 | Positive Nation
POSITIVENATION.co.uk
FEATURE: POSITIVE EAST
Positive East Helping people with HIV in this age of austerity Edith is sitting on the sofas waiting for her counsellor to come down. She’s got her weekly session, to help her talk through what being HIV-positive means for her and her relationships. She has found it hard to come to terms with her HIV diagnosis and although it is now four years since she found out she had the virus, only now does she feel able to talk about it and get her head around what the future may hold. Tony has come in to use the free gym. He hasn’t been able to work since his diagnosis and has good days and bad. He has had bouts of depression so just getting out of the house and doing something really helps. Plus, having access to free facilities really does make a difference to him as he isn’t in work. Nelson and his wife have an appointment with the welfare rights expert Positive East employs. “It’s the busiest I have ever known it,” she says, “and I have worked here for over 15 years. Universal Credit, a hardening of attitudes towards immigrants generally and austerity in particular are all making life much tougher for many people with HIV.”
Below: East London’s skyline
POSITIVENATION.co.uk
It’s just a normal morning at Positive East, now London’s largest HIV charity. The official statistics from Public Health England are alarming. More people now have HIV in the UK than ever before – at least 108,000. More gay or bisexual men were diagnosed last year than ever before – 3,250. 2 out of 3 black African men test late for HIV. 10 people every week still die in the UK because of their HIV condition with 4 out of every ten not reaching the age of 60. 25% of people with HIV in the UK do not know they have it. It is estimated that most new infection is transmitted by people who themselves don’t know they have the virus. Charities like Positive East are doing what they can. To reduce the number of people who don’t know they are infected and to reduce the number of people who test late, they do instant HIV tests in more places than anyone else. Venues include libraries, shops, even churches. “It may seem odd to get an HIV test and possible life changing news in such places but last year we tested over 2,000 people,” said Mark Santos, the charity’s Director. “It’s usually quicker than going to one of the sexual health clinics and people tell us because we have come to them we have made it easier for them,” he added.
“All our testers are trained and can give counselling and support should the test be positive. We also offer a conversation with everyone who tests about why they think they may have been exposed to the virus and we can offer free counseling
Universal Credit, a hardening of attitudes towards immigrants generally and austerity in particular are all making life much tougher for many people with HIV to help people stay HIV-negative if they want.We really don’t want to see anyone else become infected. 108,000 is already too many,” said Mark.
Positive Nation | 17
FEATURE: POSITIVE EAST
But with more people infected than ever before, on-going support services like the ones Edith, Tony and Nelson were using are increasingly important and Positive East is the last remaining HIV charity in London to offer such a wide range of services. They believe that with the right support, people with HIV can fulfil their potential and lead a full, healthy life so offer counselling, peer support, advice services, one-to-one and group help, health and wellbeing classes, volunteering opportunities and even an employability programme. The iconic building on Mile End Road is home to a gymnasium, IT centre and cafe. They also grow their own food in the garden! The charity has existed for nearly 25 years and in that time what they have offered has evolved to meet the changing needs of people living with HIV. “We have always
The iconic building on Mile End Road is home to a gymnasium, IT centre and cafe. They also grow their own food in the garden! been there for people,” said Mark, “but now we are helping people who are facing the biggest challenges since anti-retroviral therapies were discovered. Austerity and changes to welfare are making many people’s lives impossible and to have to cope with HIV on top of that is proving, for some, too much to bear. We have called the ambulance out to our building due to suicide attempts more in the last 12 months than in the previous few years put together.” “There is a clear link between HIV and poverty,” added Mark, “and an increasing number of our service users have limited income, in some cases no income at all, inadequate housing. Many are really facing a bleak future. We are doing what we can to help them but can’t conjure up decent 18 | Positive Nation
Left, Above & Below right: Positive East’s 5K Red Run 2014 homes or an equitable and transparent immigration service. The demonisation of immigrants is particularly cruel. Those ‘go home’ vans the Home Office put out last year were incredibly damaging. We even had cases of people not going to their Doctors when they were ill for fear of being targeted in the street. When you are sacrificing your health then things really have got bad. London is particularly worse than the rest of the country with HIV prevalence highest in the most deprived areas of the city.” Figures from Public Health England now show 25% of people with HIV in the UK are over the age of 50; projections suggest that will rise to 30% by the end of the decade. Growing old with HIV is not something anyone ever thought would happen. “It’s one of the things our service users tell us they are most concerned about,” said Mark, “and no-one has the answers yet. We have been running a couple of pilot studies and would like to do more. It is important that people get the right support, feel confident with the health and social care services out there and that they aren’t going to be stigmatised or discriminated against because of their POSITIVENATION.co.uk
FEATURE: POSITIVE EAST
HIV status by an ignorant nurse in a care home for example, or by people working in social services.” For all organisations, Positive East included, who funds their services is always uppermost in their minds. The Coalition Government’s ‘Health and Social Care Bill’ scrapped the Primary Care Trusts meaning it is your local council who are now responsible for HIV prevention and for commissioning support services for those who are diagnosed. But with money tighter than ever, hard choices have to be made. “The money we get from local councils, our ‘statutory funding’ has been cut by £400,000 in the last few years,” says Mark Santos, “so we are doing more than we ever have to raise money from different places. World AIDS Day is a vital part of that because it’s probably the only time in the year when HIV has a high profile. This year we have organised a 5k Red
Run (photos of which accompany this article), supporters in one of the banks did a sponsored climb of their building in Canary Wharf, we shook buckets outside London Underground tube stations and did various events in pubs and clubs across east London. We are still counting the money (!) but would hope to have raised £50,000. That’s why World AIDS Day is so important to us.” Most people access Positive East’s services through a referral from their HIV clinic. Some people do walk in off the street and providing they meet the Charities catchment area criteria of living in East London or accessing their care in East London, Positive East supports them. Those who fall out of their catchment area are signposted on to an alternative, usually nearer organisation, that can help them, although few offer such a wide range of services that Positive East do.
So with record number of people infected, charities like Positive East need all the support they can get. To make a regular donation or a one-off payment go to www. positiveeast.og.uk and click on the donate button. It really is that easy! Edith is making progress although sometimes she has some knock-backs. Just talking through what she is feeling and going through is also bringing up many other issues, not directly related to her HIV status but that in itself is also good. She is thinking about a career herself helping others come to terms with being HIV-positive. But not just yet; in her own time. Tony has decided to sign up to Positive East’s next ‘Employability’ programme. It’s a short programme full of practical ideas and support about career options, improving your CV and getting valuable interview techniques. There’s also guidance on further training and educational opportunities out there. Tony will also start to do some volunteering at Positive East as that will help to fill the gaps in his CV, give him a bit more confidence and help him learn new workrelated skills. The volunteering project at Positive East won the Queens Award for Voluntary Service this year so he will be joining a great team. Nelson and his wife are appealing the decision to, and have a hearing at in a few week’s time. Where their advice worker will accompany them. Positive East win 97% of cases taken to the tribunal, so whilst there and no guarantees, she is, at least, quietly confident.
POSITIVENATION.co.uk
Positive Nation | 19
FEATURE: SEXUAL HEALTH & THE ELECTION
Sexual Health & The General Election 2015 Terrence Higgins Trust’s guide to the sexual health, welfare and education policies of each major political party The General Election is just around the corner and there are lots of policy areas being debated and proposals being made that will potentially impact HIV and sexual health policies. At this point in the run up to the election, political parties seem to be saying something new about a different policy area every day. So who is saying what? This guide will help you to see what the Conservatives, Labour, Liberal Democrats, Greens and UKIP have said so far about health, education and welfare. There will be more announcements over the coming months but for now this is what we know. The challenge is to keep track so that when candidates come knocking on your door you can ask them the questions that you want to. Hopefully this guide will help so that you can get the information you need over the coming months. Health In the UK, there are around 26, 000 people living with HIV who remain undiagnosed, a late diagnosis rate of 42 per cent and over 100, 000 people living with HIV who need ongoing treatment, care and support. What will each party do to improve the lives of people living with HIV and reduce the levels of late diagnosis and undiagnosed? There is a wide range of proposals about health but not all the parties have given detailed manifesto commitments. It is rare for parties to talk specifically about HIV so the question is how will each party’s proposals affect HIV prevention, testing, treatment, care and support in the UK? 20 | Positive Nation
Conservatives: So far there has been a commitment to increase NHS funding in real terms each year. A commitment to having seven day GP openings from 8am-8pm has also been made alongside 5000 more GPs. So far nothing specifically relating to HIV has been mentioned by the Conservative Party but NHS funding will have an impact on HIV treatment and care so it will worth keeping up to speed with any future announcements made about the NHS. Labour Labour has said that they want to make the NHS the priority provider of all health care. They want to make changes over ten years and have spoken about making guidance produced by the National Institute for Health and Care Excellence (NICE) mandatory. This would include guidance on HIV testing and care. Labour has also spoken about giving Health and Wellbeing Boards in England greater responsibilities in signing off plans and integrating health and social care. This would mean there would be closer working between Clinical Commissioning Groups and Local Authorities so that potentially treatment and prevention would be more linked up in the planning stages as well as providing the services. Labour would give £2.5 billion extra to train more staff and have said in England people would get a GP appointment within 48 hours. They have also promised to give greater priority to mental health services.
Above: Cary James, THT and Jeremy Hunt Secretary of State for Health.
Liberal Democrats
The Lib Dems have so far said that they would give an extra £1 billion each year to the NHS and have focused on mental health. Half of their promised extra £1 billion would go to Mental Health services. They want to make sure that people who need therapy get treatment within 18 weeks and within two weeks for young people experiencing psychosis. The Lib Dems want there to be a cross party review of NHS funding to look at how the NHS can be funded in the future. They would also like all patients to be given a ‘care footprint’ outlining the cost of their care. Greens The Green Party want more money to be spent on community services and prevention. They want to scrap prescription charges and introduce a dedicated NHS tax to fund the health service. Other policies are to ban pro-active recruitment of overseas NHS staff and the promotion of alcohol and tobacco products. UKIP UKIP have said that they want the NHS to remain free at the point of delivery and to have GP surgeries open at least one evening a week if there is demand. They also want all visitors and migrants who have been in the UK for less than five years to have health insurance. There has been POSITIVENATION.co.uk
FEATURE: SEXUAL HEALTH & THE ELECTION
UKIP
widespread coverage of Nigel Farage’s comments about banning migrants living with HIV from coming to the UK.
UKIP, like several others, have plans to stop the “bedroom tax”. They also intend to stop paying benefits to anyone entering the country for five years. Announcements have also been made to limit the payment of child benefit to two children per family.
Education On education there are lots of discussions about education but age appropriate sex and relationships education is a key area of debate. Labour, Liberal Democrats and the Green Party have all said that they would have compulsory Sex and Relationships Education. The Conservatives have not said anything on SRE yet but Nicky Morgan, Education Secretary, has said she is considering it. UKIP have said that they would scrap sex and relationships education for children under ten but have not specified if they would make SRE compulsory for those over 10 years old. Welfare There is a lot of public discussion about welfare with parties taking very different tones. Nevertheless, all the parties are looking at ways to get more people working and control the amount spent on welfare albeit in different ways. Conservatives There are lots of proposals coming from the Conservatives. They have said that they will not increase benefits for working age people for two years. This will include Jobseeker’s Allowance, income support, tax credits and child benefit which they anticipate will save £2 billion. There will also be a reduced cap for households making the maximum amount in benefits a household can receive £23,000. However, currently people receiving Disability Living Allowance or Personal Independence Payment are exempt. Other changes for young people would see Jobseeker’s Allowance only available to young people after six months if they participate in “community projects” and 18-21 year olds would no longer be entitled to housing benefit. Personal tax allowance would be raised to £11,000 by April 2016 and to £12,500 by 2020. POSITIVENATION.co.uk
Above: Daisy Ellis, THT, Nicky Mrogan, Secretary of State for Education Dr Rosemary Gillespie, THT
Labour The Labour Party have said that they will repeal the “bedroom tax” (which is a charge for people receiving housing benefits that have a spare room) and freeze energy prices until 2017. Recently they have spoken about restricting access to benefits to EU migrants but the details of these proposals are not yet clear. Labour has also said that they will pause Universal Credit which earlier this year they said was ‘throwing good money after bad’. Liberal Democrats A proposal has been made to introduce a “yellow card” system rather than the current sanctions that are applied to people claiming benefits who are regarded as breaking the rules. Regarding working age benefits the Lib Dems say that a freeze could only happen if the rich are also taxing rich as well. There has not yet been an announcement on welfare cuts. Like Labour they have said that they would withdraw the Winter Fuel Payment from the richest pensioners.
Overall, every party is under pressure to reduce the deficit. There will inevitably be more announcements on what will be funded, what might change and what might be stopped. Announcements over the coming months by each party will continue. We are not sure which policies will make it into their manifestos and of course what is in a manifesto will not necessarily result in a change after the election. If there is another coalition everything will be up for negotiation, so understanding what policies each of the parties see as nonnegotiable is a helpful marker of what might be included in a coalition’s plan. There will be plenty of opportunities to ask candidates questions. Not only will they be knocking on doors and campaigning, there will be events going on locally where they will talk as well as national events where each party will set out their stall. Remember you can ask any question you want, you are the voter and you get to decide! Daisy Ellis, Acting Director of Policy, THT
Below: Cary James THT, Luciana Berger, Labour & Cooperative MP and Kieran Aldred, THT
The Liberal Democrats are also promising to raise the personal tax allowance to £11,000 by April 2016 and to £12,500 by 2020. Greens The Green Party has said they will stop the work capability assessment and restore Disability Living Allowance. They also intend to increase the minimum wage to £10 by 2020 and repeal the “bedroom tax”.
Positive Nation | 21
and current treatments do not work on it. A future cure might work better in people who start treatment early. Their reservoirs would be smaller.
Newly diagnosed?
•
Early treatment could reduce the chance of your CD4 dropping at all. This means it would never fall below the range that HIV negative people fall within. This is between 400 and 1600. This would also prevent damage being done to your immune system.
•
Treatment within 6 months can keep your immune system more like a longterm non-progressor’s (LTNP). LTNPs are people who manage to maintain high CD4 cell counts and low viral loads for several years without being on treatment. This is because they manage to maintain a HIV specific immune response. This process is not fully understood yet but is another potential cure related advantage. Maintaining that immune response could increase the chance of a cure working.
•
The risk of transmission is greatly reduced by being on treatment. This already happens widely when people are in couples with a negative partner. It also happens when couples want to have children.
•
There is a possibility of repeating what happened with the Visconti group. A group of people with HIV in France started treatment within three months of infection. They stayed on it for three to four years. Some of them have stayed undetectable and off treatment for a decade.
•
Getting an undetectable viral load may make you feel less infectious. This means more confidence when meeting new partners. Some people say it normalises HIV and reduces stigma.
•
You might feel like starting treatment makes you feel better about having HIV because you are more in control of it.
New questions? Early Treatment Everyone who is newly diagnosed is likely to think about issues such as early treatment, CD4 counts and transmission. i-Base, helps us with Q&As, this time on the topic of early treatment. The website (www.i-Base.info) includes an online Q&A service where you can email questions that will be answered online or emailed back to you privately. There are now over 1500 online questions and answers that cover a wide range of subjects, including questions asked by those newly diagnosed. Q: My doctor tells me I am in ‘primary infection’. What are the advantages or disadvantages of starting treatment early?
Around 19% of gay men and 14% of people overall are diagnosed early. One in three people are diagnosed late in the UK. This means their CD4 count is below 350. There are both benefits and disadvantages to starting treatment early.
A: Treatment in primary infection can be defined in two ways. The first is early treatment. This is treatment that starts within 6 months of infection. The second is treatment in acute infection. This is when treatment is started within a month of getting infected.
Why start treatment early?
22 | Positive Nation
•
One challenge for cure research has been the existence of CD4 cells that are not active. These are called viral reservoirs. This means the virus is there but is not doing damage. Because of this your immune system cannot find the virus
Why wait to start treatment? •
In the UK it is recommended that you start treatment when your CD4 count is 350. Research now shows that people who start at 350 can live as long as someone who does not have HIV. This leads to concern that people would have side effects and complications before treatment is needed. This is before what is already going to be a lifetime of treatment and meds. POSITIVENATION.co.uk
•
The risk of transmission may not be an issue for you. This could be because you use condoms or you do not have sex. You might also have a partner who is also positive.
•
There is the possibility of drug resistance if you do not take your meds the way you should.
•
Better and easier drugs may come later.
•
There is a chance that starting earlier might not make a difference to a future cure.
There are responses to some of these arguments. The first is about the time that is going to be spent not being on meds. It is often assumed that newly diagnosed people will have about five years before starting treatment. The number is closer to 1.4 years. An over emphasis on a lifetime of treatment is also unhelpful. It could create hurdles to starting treatment, whether this is early or at a CD4 of 350. A focus on how effective treatment is today is more positive. Can anyone start treatment early? Yes you can! Most doctors will support you if this is what you want to do. UK guidelines include the option to start at any CD4 count if you are worried about the risk of transmission. To get this you have to say that you want to be less infectious to protect your sexual partners. You can say that this will improve your quality of life by reducing your and your partner’s anxiety. What if my doctor says no?
Reasons that you may not want to start early include: •
Avoiding starting treatment earlier than you have to. Life expectancy is equal to a HIV negative person if you start at CD4 of 350.
•
Risk of transmission is not an issue for some people. For example if their partner is positive to.
•
Avoiding an earlier than necessary risk of causing drug resistance if meds are not taken properly.
•
Better and easier drugs might come later.
•
Starting earlier might not make a difference to a future cure.
Either way it is your choice. The idea of starting treatment early is still new. You do have a right to decide to start early if you want to. Despite guidelines saying to start with a CD4 of 350 it is possible to start earlier in the UK . Both discussions about advantages and disadvantages is partly based on assumptions.
This is why it is important to talk through both. It may be a good choice for some people and not for others. A choice should be made after having gone through the information and research about both arguments. More Information: You can find a presentation on some of these issues here: http : / / w w w. bh iv a . org / d o c u me nt s / Conferences/Autumn2014/ Presentations/141009/SimonCollins.pdf A video of that presentation here: http://www.bhiva.org/141009SimonCollins. aspx And a lecture at the AIDS2014 conference in Melbourne on cure research and the Visconti cohort: http://pag.aids2014.org/flash.aspx?pid=1796 And information about deciding when to start treatment here: http://i-base.info/guides/starting/when-tostart
You can ask for a second opinion. If that does not work you can change clinics. You can also contact i-Base for more information and help with this. To sum up there are both reasons you might want to start early and reasons there are not. The reasons for starting early include: •
A better chance of limiting a viral reservoir. This would increase the chances of a future cure working.
•
Early treatment could increase the level to which your immune system recovers.
•
The risk of transmission is greatly reduced by being on treatment.
•
There is a possibility of repeating what happened with the Visconti group.
•
May make you feel less infectious and give you more confidence with your partner or partners.
•
May reduce the stigma and make you feel more in control of your HIV.
POSITIVENATION.co.uk
Positive Nation | 23
24 | Positive Nation
POSITIVENATION.co.uk