London HIV clinics are about to embark  on a new approach to prescribing Antiretroviral drugs (ARV’s) that will last for at least two  years

The government has given NHS managers the job of saving a lot of money, fast! So they are doing what they can to comply, this process is euphemistically called making ‘efficiency savings’ but can more accurately be described, in practice, as ‘cuts’.

The London Specialised Commissioning Group (SCG) commissions HIV care and treatment for London hospitals. It recently undertook a tendering process aimed at saving money by using less expensive but clinically appropriate drug options for patients accessing treatment in London,  The objective being to treat more HIV patients within limited resources. For more information go to www.londonspecialisedcommissioning.nhs.uk

At a time of Government cuts in the NHS budget, I don’t object to saving money so more people with HIV can be treated but doing so does have implications for patient choice.

There are certainly lessons to be learned from the way in which the process was undertaken i.e. the lack of any meaningful consultation with patients about what was going on. Effective public patient engagement is not always easy, consultation takes time and can mean people object to any proposals made, time constraints and the legal constraints relating to the tendering process are also important considerations.

Still, now it’s a done deal we have to live with it. The new arrangements will certainly have an impact on the choices people who start treatment in future can make about which drugs they are able to take.

It may also affect those currently on treatment, they may be asked to change drugs but this should only happen where it is clinically appropriate.

Essentially, no matter which clinic you go to in London, in future you and your consultant will choose from the new ‘set menu’ of drugs available.

Soon a short and long version ‘Patient Information Leaflet’ will be available in your clinic telling you about the changes in more detail, a draft version is already available in some clinics.

It is important to understand that the new prescribing rules only apply where it is ‘clinically appropriate’. This means any drug combination you are asked to take has to work for you, not only against your personal strain of HIV, but you also have to be able to take it, as prescribed, and deal with the side effects.

Your Consultant is a Doctor whose first duty under the Hippocratic Oath is to ‘do no harm’; he/she should never ask you to take something you cannot manage to adhere to or which is making you feel ill simply because a more suitable drug is more expensive and is not available on the new ‘set menu’. So, while you may find that cost of treatment is discussed with you it should not be the deciding factor in what drugs you are prescribed.

Remember, Doctors prescribe the pills but we are the ones taking them, you can say NO’ to a particular drug or combination of drugs, but this doesn’t mean you should stop taking your ARV’s,  you just need the ones that are right for you.

Doctors are not mind readers, they are also very busy and you may not see them as often as you used to, especially if you are defined as a ‘stable’ patient. So, if you feel that the drugs you are asked to take are not suitable for you, because of side effects, because you cannot manage adherence issues or for any other reason, then you need to discuss this with your Consultant. If you find this difficult, then take along a friend, partner or someone who can help you make your views known.

Your Consultant will be aware of the new prescribing guidelines and the issues they raise and will have a professional interest in how they are affecting the patients under their care. The better your relationship with your Consultant and the more honest you are with them about any concerns you have the better for you, for them and for everyone else.

If you feel that your Consultant is not taking your concerns seriously, you have the right to change Consultant or even Clinic. If it comes down to a choice between changing clinics to find a more supportive Consultant or stopping your medication, then there is no contest: change Clinics, do not stop taking your medication.

If you have something to say about the process by which all this came about, then tell your Consultant.  Write to the London Specialised Commissioning Group (SCG), their contact details are available on their website, and raise the matter at the Patient forum in your clinic if there is one.

You can also choose to attend the Public and Patient Engagement sub group of the SCG and ask questions; again further details are available from their website. You can raise the matter with the NAT (National Aids Trust) and let them know this is an issue is something they should get  involved with. If what happens in London is considered a success, it could be rolled out elsewhere.

The Government’s rhetoric repeatedly stresses ‘Patient Choice’ and ‘no decisions about us without us’, well ‘Choice’ at least in terms of drugs has just been restricted and that decision had indeed, been made without us….this time.

The Government has announced a ‘pause’ in the Healthcare reforms to ‘listen’ so, you could write to your MP to let them know what is happening and what you think should happen, both now and in the future, to the services you rely on.

Perhaps you want to bring this or any other matter to the attention of those MP’s and Peers who are particularly interested in matters relating to HIV/AIDS, e.g. the impact ‘Welfare Reform’, you can do so via the All Party Parliamentary Group on HIV/AIDS, their web site is at www.appghivaids.org.uk

My first memory of Annie Lennox was watching an interview with her and Dave Stewart on the now infamous music show ‘The Tube’ back in 1983.

The pair had first met and collaborated in the ‘The Tourists,’ but it was the music of the ‘Eurythmics’ that would catapult them both to international stardom: they had just returned from the US where there single ‘Sweet Dreams Are Made of This,’ was number one in the Billboard Top 100.

In her late 20’s at the time, Annie had the demeanour of a ‘strong confident women’ her short  cropped red hair, androgynous plaid trouser suits and signature leather gloves,  made her a fashion icon, her look was copied by women everywhere.

But, the full impact of the HIV/Aids epidemic was unknown in 1983, and not even Annie could have known the ‘tour de force’ that she would become in her later years.

Today, Annie Lennox is not only famous for her distinctive voice with its raspy tones, but for her humanitarian work and in particular as a proud and loud HIV Activist.

SOUTH AFRICA

It all started when she was asked by Nelson Mandela to perform at the 46664 concert in South Africa in 2003, and later when she met Avelile a seven-year-old girl with HIV.  She had helped raise money for HIV/Aids in the past, but it was in South Africa that she got a ‘ wake up call ‘ on the seriousness of the pandemic.  Since then she has been a tireless campaigner raising HIV awareness: with a particular focus on woman’s rights, criminalisation and  stigma and discrimination.

Annie says “I work with Treatment Action Campaign in South Africa, which fights for the rights of people with HIV, the chronically poor with no rights or protection. It’s outrageous that women just die by the wayside, their children left as orphans – there are approximately 12 million AIDS orphans across Africa. Having seen it for myself, it completely changed my paradigm.

“I decided to focus on South Africa as that was the country that I had my wake-up call about the scale of the HIV/ AIDS pandemic. I shared a connection with Mandela, a man who represents the nobility of the human spirit. Yet even when Mandela spoke out about HIV, people didn’t take that call-to-action, so a country which had struggled with apartheid, now inherited this pandemic.”

In 2003 1000 people were dying every day from HIV/Aids in South Africa.

“I wear my HIV Positive t-shirt in solidarity with those who are affected or infected”

THE GLOBAL EPIDEMIC

In her role as UN ambassador to UNAIDS Annie is well informed on the progression of the epidemic and the challenges that lay ahead. Annie told Positive Pulse: “The new Global Report from UNAIDS shows that fewer people are becoming infected with HIV and that we have broken the trajectory of the AIDS epidemic. We have reached the first part of the Millennium Development Goals of halting and reversing the spread of HIV.

“In less than five years, we have crossed the half way mark towards providing medicines to HIV positive pregnant women, in order to prevent transmission of the virus to their babies securing better health for mothers and children.

“The fight is far from over. We still have a long way to go. We need to continue to strengthen our focus on the needs and rights of young women, who are particularly vulnerable to HIV.”

SING CAMPAIGN

Present when Mandela described the African HIV pandemic in 2003 as genocide, one in which women and children were the frontline victims, was a turning point in Annie Lennox’s life.

In 2007 Annie consolidated her work into the SING campaign and a single was planned. She invited 23 international female artists including: Celine Dion. Madonna. Joss Stone and the Sugababes and many more…They raised £100k from the single.

To date a total of over £1 million in donations have used to help SING to prevent the spread of HIV in South Africa. SING raises awareness in other countries also, including the UK; this is helping to increase global action to support infected and affected women and children.

THE ANNIE LENNOX FOUNDATION

The Annie Lennox Foundation raises money for projects supporting and educating women and children in Africa, who are living with HIV. ‘Universal Child’ – the last single releases, was inspired by Annie’s personal experiences in Africa and all the royalties went to the foundation.

“All children need loving care, safety, security, protection, good nutrition, a decent place to live, access to medical care etc, but millions of children receive none of these things. There is an incomparable disparity between the lives of children growing up in developing countries, and their Western counterparts,” says Lennox

ACTIVISM

Over the years Annie has lobbied politicians, given performances and interviews, and spoken at international events about HIV. She has used her unique voice to fight stigma and discrimination.

Her latest attempt to raise awareness was to take part in the international UNAIDS and Body Shop campaign ‘Be An Activist’ which is asking people to join the fight against HIV.

Annie was joined by other HIV activist whose stories have been documented and pictures taken by Ian Rankin. “If we no longer care, merely living in our own bubble with no conscience for others, guided by our self interest at heart… then what kind of society are we?” said Annie when she was interviewed.

An exhibition of these iconic pictures will be held at City Hall, London until the 10 November and the images will be used as part of the international campaign in Body Shop windows across the world throughout December. There was also redesign of the iconic Red Ribbon which you can buy from the Body Shop. All proceeds going to Body & Soul.

“Raise your voice today, be an activist, fight for: Zero new infections – Zero discrimination – Zero AIDS related deaths”

MUSIC

With a career spanning four decades, record sales in excess of 80 million and more awards and accolades than any other female artist – eight Brits, Golden Globe  an Oscar, and  the Red Cross Service to Humanity Award, are just some of them.

You might be forgiven for thinking, that by now this will have all  gone to her head! In fact you may be surprised to learn that Lennox comes across as someone who is rather humbled by her success.

This is apparent when she talks about ‘Island’ her new record label. “The team were so enthusiastic, and so excited to be working with me, and I was blown away that they felt like that. It feels very energized, and fresh and new. And that’s a great feeling for me.”

Born on Christmas Day, it seemed inevitable that Ms Lennox would eventually make a Christmas album. Christmas Cornucopia will undoubtedly take the Diva back to a simpler time when she was a seven-year-old girl, attending Miss Auchinachie’s choir in Aberdeen. She was being immersed in the cornucopia of Scottish folk songs, hymns and carols. “Through her I learnt all these beautiful carols and songs.” The album is clearly a homage to her Choir Mistress.

Christmas Cornucopia is out on Island Records: £8.95

If you would like to buy a copy click here

If you would like a chance to win a copy of the album then click here

To learn more about ‘A Christmas Cornucopia’ and Annie Lennox’s humanitarian work go to: www.annielennox.com

To learn more about the SING campaign go to:  www.annielennoxsing.com

To Learn more about the UNAIDS and Body Shop ‘Be An Activist’ campaign go to: www.thebodyshop.com

A message from Annie for Posiutive Pulse Readers

“Raise your voice today – be an activist – fight for”

Zero new infections – Protect yourself and your loved ones from infection. Know your status – get tested

Zero discrimination – don’t tolerate STIGMA and DISCRIMINATION towards people living with HIV – Speak up  - Take a stand – defend Human Rights

Zero AIDS related deaths – convince people in power to ensure that money is available for treating, caring and supporting those who need it!

There is no doubt about it, being HIV-positive can take you on a challenging journey to say the least, and the question of relationships and the issues they bring to the table will hit home for some, sooner rather than later.

For couples, a HIV diagnosis within the relationship will either make it or break it. For a singleton it will introduce a whole gambit of new dilemmas to deal with from: If, when and how should I disclose my status, to maybe I should just become celibate!

The root-cause of the problem is easy to pinpoint:  the misconceptions and myths that some people still hold about how HIV and  how it is transmitted are to blame. It is those misconceptions that can be so hurtful and damaging to a person that is living with HIV: after all it is worth remembering, there are a thousands of couples living in relationships were one is positive and one is negative -  or what the medical profession call: a sero-discordant relationship.

That in mind, and in my own small attempt to try and break down some of the barriers in both the HIV-positive and HIV-negative communities, I would like to introduce you to  Richard a young HIV-negative man with a very important story to tell…

My name is Richard. I am 19-years-old. I go out with a girl who is HIV positive and we have been going out for a year although I have known her for the last six. When she told me, I was shocked because of the way the media often portrays people with HIV. My girlfriend is smart, attractive and fun to be with, not an HIV sufferer or anyone’s victim.

I accepted her status because she is a human being and she is also the same person that I went to secondary school with. Sometimes it’s hard having a relationship with her but I think that goes for all women! The only difference is that she has a virus in her blood that has no cure. I worry about her health but she has been taking her treatment now for ages.

Most men my age think that you can’t have sex with someone with HIV. This is totally wrong you are not in any danger unless you don’t wear a condom but this applies whether someone is HIV-positive or not. There are other illnesses you can get like gonorrhea or syphilis. Or you may not get a virus, but end up being a teenage father instead: with no resources to support your child and all your dreams dashed. There is no difference between having sex with someone who is infected and someone who is not.

My girlfriend is healthy probably much healthier than me. Her medication keeps her healthy you never know she’ll probably live longer then me. Me going out with her has given me lots of knowledge… like most people think that when someone has HIV it’s automatically AIDS which is wrong. No one can catch AIDS and no one has ever died from AIDS and no one has ever died from AIDS. Unfortunately many generations of people have died from an AIDS related illness.

I have learnt that it’s hard for anyone who is HIV-positive – let alone a child or young person – to live in a world where people are narrow minded and not willing to learn the truth. If you don’t open your mind up to different things you will never learn anything. Due to treatments and medication available you can’t tell what someone with HIV looks like. They could be your next door neighbor your best friend your brother or even your mum.

I have also learnt that you can never tell who you might fall in love with, because there is no rule book telling us who we should or shouldn’t love. It is a learning experience and if I am still with her when we want children I also know that we can conceive children who are not infected with HIV. Of course I really hope that one-day scientists will find a cure that could help my girlfriend, but while there is no cure all we can do is be there for each other.

By John Williams and Sam Fraser the YMCA’s Positive Health Coordinator

Over the last two decades gyms have replaced the church as our preferred place of worship. People religiously pump and burn to attain that sculptured body or to reach that elusive ‘size-0.’

HIV drugs have transformed our lives and today positive people face different challenges. Issues such as: stigma and discrimination, drug side effects, depression, lack of self-esteem and social isolation or simply trying to attaining a good work/life balance are common concerns.

So could exercising help us to manage these issues more effectively?

Some positive people have started to wake up to the idea that exercise might help redress the imbalance often felt after a HIV diagnosis. Many are using exercise as a form of rehabilitation after health ‘set backs’ or ‘late diagnosis’.

Whether your aim is to gain or lose weight or simply tone up, the benefits can extend deeper than the obvious physical improvements.

Sam Fraser of the YMCA’s Positive Health says: “It’s a huge reward to see a client who has never set foot in a gym to go on and achieve great results. Over time they find that exercise can have a positive impact on their physical and mental wellbeing.

‘as a result they start to rebuild their health with exercise and the gym soon becomes an important part of their lifestyle… the majority of people will see improvements in their self-esteem, confidence, sleep patterns and a reduction in stress levels,” She added

Feben, a member of Positive Health said: “Before I started the gym I really believed I was close to death. I was suffering from depression and had lost hope. I also had an eating disorder and an abnormal body shape.

‘There has been a tremendous change in my life since I started to exercise: morally, mentally and physically. I really enjoy cardio exercises like skipping, cardio kick, samba and swimming. This has helped me to lose a lot of weight. I am happy and now have a positive outlook to life. My confidence is back and skin is glowing again. I would recommend exercise anyone.”

The science…

Studies have show that regular exercise can slow down the progression of HIV and increase blood counts. Exercise can also increase endorphins which are the body’s natural feel good chemicals boosting your mood.

Getting Started…

Exercising isn’t just about lifting weights in the gym! It can also be a fun activity incorporating many disciplines such as: tai chi, yoga, swimming or even salsa! However it is vital to find something you enjoy doing so you remain motivated and enthusiastic.

If you are new to exercise you should start slowly and gradually increase the length and intensity of your workout. Set yourself ‘SMART goals i.e. those that are: specific, measurable, attainable, realistic and timely.

Ask yourself: what do you want to achieve? When do you want to achieve these goals by?

If you are experiencing side effects from medication or starting treatment, this can be managed, so don’t be put off. All these factors play a part in the design of your exercise programme and remember… your body will need time to adjust to the new demands being placed on it.

Healthy Diet…

When you are HIV-positive, your body needs extra calories to help keep your immune system strong. Make sure your diet is balanced and that you are eating your ‘five a day’.

Breakfast is the most important meal-of-the-day so don’t be tempted to skip it. Try to avoid sugary snacks: find some tasty healthy alternatives like health bars, fruit and nuts or even dark chocolate.

Manage those side effects…

Including a variety of exercises such as resistance, cardiovascular and flexibility into your exercise programme can help you to lower blood pressure and minimise some of the long-term side effects of medication such as reducing cholesterol and triglycerides.

Lipodystrophy…

A serious side effect of some HIV drugs is fat loss; affecting the face, buttocks arms and legs and fat gain which affects the shoulders, neck, stomach and breasts (in both men and women).

If you are experiencing muscle wasting or weight loss, a programme that includes resistance (weight training) will help build muscle. Exercises could include the leg press, chest press or if at home, you can include activities such as housework, gardening and walking.

If you are experiencing weight gain, aerobic exercises such as fast walking, running, use of a cross-trainer, all combined with resistance will help you lose weight.

TOP TEN TIPS

• Find a gym that is near to your home or work. There are plenty of the new lifestyle gyms around but do not forget that your community gym will often be cheaper and just as good.
• Enlist the help of a qualified instructor; they will show you how to stretch and how to maintain correct form and technique when exercising. Some gyms offer this as part of the start-up package.
• Make sure you wear a comfortable gym kit and a good pair of trainers: they will give you proper support and minimise injury.
• Set realistic goals and objectives with a date in mind for when you want to achieve them.
• Start gradually and build up as your body grows in strength and you grow in confidence. Start with 20 to 30 minute workouts, two to three times a week and gradually increase to 60 minute sessions.
• Break up your exercise programme by including: cardiovascular training (walking, jogging, swimming, bike riding), resistance training (weights/bodyweight), flexibility and balance training (stretching, tai chi, yoga).
• Never train the same muscle two days in a row as the muscles need time to repair and grow.
• Make sure you keep hydrated: before, during and after exercising. Exercise will increase your need for calories so make sure you are eating a healthy balanced diet.
• If motivation or confidence is an issue for you, ask a friend to train with you. But if you are going it alone, do not worry as most gyms have an informal friendly atmosphere.
• Listen to your body and make sure you get adequate rest as overtraining can have a negative effect.

Do I need to consult a doctor before I start to exercise?

If you are in reasonable shape you should be fine. However, if you suffer from any of the following then you should check with your GP or consultant before you start: high blood pressure, heart trouble. family history of early stroke or heart attack, dizzy spells, breathlessness after mild exertion, arthritis or other bone problems, severe muscular, ligament or tendon problems. In any event, a health questionnaire should be completed prior to starting the gym.

Confidentiality…

Remember, never reveal your HIV status to anyone that you do not trust. You do not have to tell your fitness instructor unless you are perfectly comfortable with it. However, if you are experiencing any side effects from the medication or have any conditions such as peripheral neuropathy, it is advisable to inform the gym instructor.

Finally remember… exercise should be fun, good luck.

Peter’s Story…

Peter from London was diagnosed HIV 15 years ago. He said: “A HIV diagnosis back then came with a degree of uncertainty, so I buried my head in the sand and basically hoped for the best. Five years ago when I was turning 40 I began to wonder, was it the lifestyle choices that I was making, rather than my HIV status that would be the crucial factor in how long I could expect to live for.”

Peter was a social smoker so he gave up for good. He then decided that he would get fit slowly so took up swimming again and within the year had joined a gym. He said: “I had never been in to a gym before so I was understandably apprehensive as I was pretty skinny back then and very self-conscious. Today going to the gym is something that I just do rather than being a big deal. I have put on a stone in weight and for the first time in my life, I like my body! It was the best thing I ever did.”

YMCA Positive Health is a medical referral programme for individuals living with HIV and who attend a number of clinics in the London Area.www.ymca.co.uk

FURTHER READING

Scroll down this link and you will find a  great article by Jon Hanley on improving your Butt www.positivenation.co.uk

A  guide to Lipodystrophy  by THT www.tht.org.uk

GMFA guide to starting up  gay sports group or club www.gmfa.org.uk

That is the  big question if you are a HIV-positive smoker. What’s more, the stress and worry of living with long-term health condition like HIV often relegates giving up smoking to a permanent place at the bottom of  your ‘To do list.’

It’s little wonder smoking rates are considerably higher among people living with HIV compared with the general population.

There are always so many questions and excuses: If I gave up, would it make that much difference to how long I live?  I have smoked for so long, can  it really make any difference to me now? It will just make life unbearable. Besides it helps me to relax and I enjoy it!

I battled with these very questions and dilemmas myself, and the last thing on my mind when I got diagnosed, and for many years after, was giving up my modest 20 a day – Silk Cut habit – after all they were low tar!

Despite my reluctance to face facts, I am not stupid, I just lacked a little – will power. I was aware that HIV and smoking are a dangerous mix and that I had an increased risk of a range of illness like heart attack, high blood pressure, emphysema, bronchitis, chest infections (I got regular ones,) gum disease and a range of cancers including lung, mouth throat anal and stomach. The list makes grim reading, I know.

Finally a large international DAD study is able to answer those questions at last: HIV-positive people who give up smoking can drastically reduce their risk of cardiovascular disease and heart attacks. Dr Kathy Petoumenos, PhD, who presented the study at Conference on Retroviruses and Opportunistic Infections in San Francisco, also pointed out that the reduction in risk mirrored those seen in people NOT infected with HIV. This is great news for hivers that want to quit.

Now, if your a smoker I  hope that I have got your attention and that quiting really is worth moving from the ‘to do’ to the ‘done and dusted’ list. Health is a big reason to quit but so is cost or maybe you’re simply tiring of the habit or experiencing pressure from partners. family or children.

There are a myriad of stop smoking aids like Nicotine Replacement Therapy (patches and nicotine gum) the drugs Zyban or Champix and books like ‘Allen Carr’s ‘Easy Way to Stop Smoking.’ Of course,  old fashioned – will power – is one of the best ways to quit, Even gadget junkies are sorted, Max Kirsten has developed an App for your iPhone or  iPod – he helped Ewan McGregor quit – using  his hypnotherapy method.

MY TOP TEN TIPS TO QUITTING.

• Decide when you want to stop and stick to it.

• A week before your quit date, start to cut down.

• If you feel you will need support during this time join a cessation group.

• Remove any ashtrays from the home.

• Smoke your last cigarette on the morning of your quit day and keep yourself very busy – this worked for me as by the next morning I had done 24 hours.

• The following morning your craving to smoke will be less strong, as you will have not smoked for 24 hours.

• When you get a craving take a cold drink of water or distract yourself. The craving will pass in 5 minutes.

• Join a gym or try physical activity like swimming or football.

• If you have a weak moment and relapse, it is important not to think you have failed. Put it down to experience and carry on. Most importantly don’t buy any cigarettes, remember you are still a non-smoker.

• Take it one day at a time.

Giving up smoking is no easy feat. I was a twenty a day smoker for 25 years, but if I can do it, anyone can. Do I miss the cigarettes? Well I am not going lie, I do very occasionally think a cigarette might be nice, but I would never go back.

I have now joined a gym and learnt to swim. learning to swim was a life-long ambition, that I could not have achieved had I continued to smoke. I have not smoked now since August 2005. Good luck and let me know if this article inspired you to quit.

Ask your GP or clinic Dr about local cessation courses.

The NHS run  various programmes to help people quit including a free quit kit and helpline. You will also be able to find out info about local stop smoking services near you at  www.gosmokefree.co.uk

GMFA run free smoking cessation courses for gay men. www.gmfa.org.uk/stopsmoking

Cara Trust are running a smoking cessation group in partnership with Kensington & Chelsea smoking cessation service. 10 May – London – Runs for 12 weeks to Monday 26th July. 2:30 – 4pm. To book call a place call 020 7243 6147 or email: mail@caralife.com

Quitline offer confidential help and advice tel: 0800 00 22 00 www.quit.org.uk

Why not download the Max Kirsten Quit Smoking APP at from your app store £4.99 for more info go to   www.maxkirsten.com