Tag Archives: testing

A patient’s journey through their hepatitis C treatment and care.

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This article is a guest post by David Rowlands, see toward the bottom for contact details.

Insight 7: “Motivation is key”
(Treatment Week 4 of 12)

When I first started treatment I had a number of blood tests, one measuring the “viral load” which showed the amount of hepatitis C present within my blood. At this time my viral load was showing to be 44,270,000, for me this was a very high result and I felt anxious about my next blood tests which were 2 weeks into my treatment. I have now received these blood results and I have had a huge reduction in my viral load. This is fantastic news and now is showing at 452.

Feeling Anxious

I felt anxious about having my blood tests, this is totally normal. I find speaking to a close friend or family before or after getting results does help and you as you are able to air any concerns you maybe having.

Feeling motivated

Receiving these results has motivated me. I am taking the correct prescribed medication at the correct times and these results are showing this. These results are helping me to stay on track of my treatment.

Not every patents viral load drops so quickly. I would contact you healthcare team or AbbVie Care, if you do have any treatment concerns. They may be able to help and support you to make the changes needed, I am sure you will want to achieve the best outcomes from your hepatitis C therapy and making small amends to when or how you take your treatment could be an option.

What motivates me to stay on track?

  • I have high chance of curing my hepatitis C.
  • I feel better now, than in a long time.
  • I might stop feeling so exhausted after clearing my hepatitis C.
    Already I have got rid of the brain fog I was experiencing.
  • I can improve my liver health.
  • I can drink alcohol again when I have completed treatment.
  • I won’t need to worry about passing hepatitis C onto someone else.
  • I won’t have to worry about how to tell people I have hepatitis C anymore.
  • I can live free from fear of serious liver disease or liver cancer in the future.

Motivational messages to help you stay on track

The AbbVie Care patient support programme offers motivational messages throughout your treatment. The programme tailors the support a patients gets using patient activation measure (PAM) score. This score (low, medium and high) will determine the number of messages you receive through your treatment.

Here are some examples you may receive

Week 2 (High and medium PAM score)
“Hello from AbbVie Care. Well done on getting through your first week and welcome to AbbVie Care. We are here to support you if you need us in addition to your specialist team. Call us on 0800 1488322”

Week 3 (Low PAM score)
”Hello from AbbVie Care. Try to keep a positive frame of mind. Think about something that makes you smile or link up with someone who can support you if you are struggling”

Week 4 (Low PAM score)
“Hello from AbbVie Care. Well done on getting to 4 weeks, you’re doing really well. Only 8 weeks left to go till you complete treatment. Remember every single dose counts for the best chance of a good result”

Try something new

It’s the last thing you want to be doing when you don’t feel one hundred percent, but I have found trying something new has given me more energy. Running, walking, and cycling has given me fresh air, even if it has been for a few minutes.

I feel it has improved my moods, stress, and physical health, but also made me sleep better in the evenings. If you don’t feel like you have so much energy, read a new book or learn a news skill, use this treatment experience to do something new, explore something you have always wanted to.

New week…..

My insight will be focusing on “side-effects” I believe this is an important topic to discuss to look at what minimal side-effects I am experiencing and how I addressing these.

About the author:

David Rowlands is the director of Design-Redefined.co.uk, delivering effective healthcare communications to enable people with HIV and/or hepatitis C (HCV) to become better engaged with their treatment and care.

Drawing on his established networks and collaboration with partners, David is able to bring healthcare together, by engaging patients & organisations, healthcare providers, physicians, stakeholders & policy makers.

Contact David via Email, Twitter, or visit his website.

Thanks for reading, let us know what you think in the comments below, or you can find us on Facebook or follow us on Twitter for more!

TWB  FBB

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HIV testing offered at Berkshire library and other public buildings

time-to-test-logo

A sexual health charity is to offer HIV tests at a public library in Berkshire.

Thames Valley Positive Support (TVPS) is offering tests at Bracknell library and at community buildings in Wokingham and Newbury.

The move comes after the success of its Time to Test project, which began offering tests at Tesco Extra in Slough.  The charity said it decided to offer appointments in public places in order to “normalise” HIV testing.

Jessica Harding, deputy chief executive of TVPS, said: “It has been hugely successful. We weren’t actually anticipating the overwhelming demand we had.

“We had people travelling from all over the country to see us.”

‘Huge fear’

The scheme will begin on Tuesday in Bracknell. Tests will be held on Wednesdays at Broadway House, Newbury, and Thursdays at the Salvation Army centre in Wokingham.

Ms Harding said: “It is definitely normalising testing – also there is a huge fear from quite a few people that they will be recognised if they go to a sexual health clinic, so this takes away that barrier.”

The twice weekly testing at Tesco, which originally ran as a six-week trial, has now been extended until December.

Story via BBC

DO YOU LIVE 100 MILES NORTH OF BERKSHIRE?

WOULD YOU LIKE A FREE RAPID HIV TEST FROM LASS?

For our Leicester readers, we know you may not wish to travel all that way to get a HIV test, did you know we offer offer a completely free and confidential rapid HIV test (results within 60 seconds from a simple finger prick test)!  We use the Insti HIV test produced by BioLytical laboratories. The test is 99.96% accurate from 90 days after  contact for detecting HIV 1 and 2 antibodies.  We also have a mobile testing van which is often out in communities providing mobile rapid HIV tests. Appointments are not necessary, call us (0116 2559995) we’re here to help.

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Canon Gideon Byamugisha visits Leicester (7th July to 13th July)

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A week of opportunities to build your knowledge and understanding about HIV and other social issues from a personal perspective with Canon Gideon Byamugisha

Who is Canon Gideon Byamugisha?
Rev Canon Dr Gideon B. Byamugisha is an ordained priest in the Anglican Church of Uganda. In 1992, he became the first African religious leader to openly declare his HIV-positive status. He has since devoted his life to an HIV / AIDS ministry which has taken him to over 40 countries in sub-Saharan Africa and many other parts of the world.

Gideon is driven by a passion for the dignity and rights of all people, especially those marginalised, stigmatised and discriminated against because of their HIV positive status. He has played leading roles in the Church of Uganda’s AIDS program, the Uganda AIDS Commission, World Vision International, the Ecumenical Advocacy Alliance, Christian AID, special conferences of the United Nations, and in founding the African Network of Religious Leaders Living With or Personally Affected by HIV and AIDS.

Rev. Canon Dr Gideon Byamugisha in Leicester
Canon Gideon is in Leicester & the area supporting different LASS events from 7th July to 13th July. Canon Gideon’s visit theme is “Love (in any language) fluently spoken heals”. “Reaching & sustaining zero new HIV infections, zero household level poverty, zero youth unemployment & zero socially sanctioned violence”

The following are open to the public and you are very welcome to come to one or more of these.

HIV & Belief Session
Wednesday 9th July 2014: 10 – 1pm
Venue: LASS (53 Regent Road, Leicester LE1 6YF)
Canon Gideon will lead this session on HIV and Belief – exploring issues about stigma, self-stigma, support for testing and condom use and reducing discrimination and prejudice.
The session will be of interest to people whose faith / belief plays an important role in their life also for those with an interest in the role that faith and belief have on people’s lives to help them cope or otherwise with a long term condition like HIV.

An audience with Canon Gideon
Thursday 10th July: 4pm – 8pm:
This is an opportunity for Faith leaders and elders to meet Canon Gideon at LASS. Come along and find out more about his ministry and the theme of this visit. Light refreshments will be served.

Football & Faith
On Saturday 12th July: LASS is holding a Football & Faith Event for all the family at Emerald Centre, Gipsy Lane, Leicester LE5 0TB. 6 football teams will compete for the LASS “Know your HIV Status” trophy; we will be entertained by Gospel choirs; there will be family entertainment including a Bouncy castle; address and prize giving by Canon Gideon. There will be different health information and testing available at the event including HIV testing, information about prostate cancer and blood sugar checks. Tasty food will be available to buy from different stall holders.

For Further information or a training session booking form:
Please contact LASS on 0116 2559995.

Want more? – Read these articles:

 

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The Influence & Effects Of Community HIV Testing for the African Communities in Leicester

A special research report by Diana Inegbenebor of African Health Policy Network, and Celia Fisher, of Leicestershire AIDS Support Services

Leicester City has almost the most diverse population for a city in England, with predictions that there will be no ethnic majority by 2012. There are many different African communities in the city, this increases the challenges for HIV awareness, HIV testing and prevention interventions as there are many different aspects and cultural differences to consider. Leicester City has an above average number of people with diagnosed HIV, with a current prevalence of 3.2 per 1000.

This is the 7th highest rate in England. In this context LASS (Leicestershire AIDS Support Service) launched its Rapid HIV testing service in June 2009, supported by a Clinical Governance Group.

The uptake of testing within the African communities was low during the first year of the Rapid HIV testing service compared to the uptake from other communities in Leicester. The Community tester volunteer project was initiated to empower African communities with knowledge about HIV and the skills to deliver Rapid HIV testing as community volunteers in association with LASS. Groups of people from different African communities have taken the Rapid HIV testing training, with a total of 28 of these community volunteers completing the training to 1st September 2011. The benefit of the community tester approach is that each person trained understands their community and can adapt and tailor an approach as necessary.

This research report is focused on the effects of the LASS Community Rapid Testing training with different African communities in Leicester and the influence of trained community testing volunteers on the uptake of HIV testing. Key objectives are:

  • To compare the uptake of POCT HIV testing in the different African communities before and after the LASS community HIV tester project was initiated.
  • To determine the cost benefits and savings of using Rapid HIV tests delivered in the communities in non-clinical settings and by non-clinical volunteers.
  • To find out the motivation for people volunteering to become testers, keeping in mind the training includes an HIV test for each person.
  • To provide recommendations about using and evolving the community tester model in what will become a resource limited environment.

A literature review was undertaken to determine what information is available about Community HIV Testing models. The review summarises evidence sourced 3 from Medline/Pub med, Global  Health/Global Health Archive, Cochrane, and Google scholar. Review of material about Rapid HIV Testing reiterates the effectiveness of HIV rapid test kits in early detection of HIV especially for use in the community. There are models of practice for using volunteers in HIV prevention and care work. A study in Zambia looked at the role of community volunteers in voluntary counselling and testing.  They concluded that community volunteers, with approved training and on-going supervision can play a major role to provide counselling and testing services of quality. Research into “training to test” shows that volunteer testing programmes have been tried and proved successful in other countries.

Analysis of the uptake of Rapid HIV testing by people from African communities is compared between 2 periods – before and after the community tester project was started. The analysis clearly shows the effectiveness of focused interventions with 100% increase in uptake over similar periods of time. The benefits of focused interventions alongside accessible HIV testing are evident – in particular taking HIV testing out to the community, with significant numbers of people getting tested at these events. The trained community testing volunteers understand the benefits of being tested and have a significant effect on the acceptability of testing in the communities. There are more tests carried out in the office based setting after these interventions, with 3 new diagnoses in one period due to these influences.

The experience with the different communities highlights that it is important for HIV to be openly discussed to enable people to have the confidence to get tested. When communities are openly talking about HIV and the benefits of testing more people will get tested. The community testing volunteer approach gives an ideal opportunity for people to practice sharing strong messages about HIV and HIV testing.

Results from the qualitative research show that people who have been trained to test were generally very satisfied with the knowledge they had accrued from the training course, and were willing to take what they had learned to their communities, to educate and empower others. People are motivated by doing things for their community. In this model the testing is encapsulated in a ‘bigger’ outcome for the individual.

The effect of the community tester model increases the confidence within the community generally as they have access to new skills and knowledge. The majority of people in each African community here in Leicester have direct experience of people living with HIV, whether locally or back home.  LASS have anecdotal reports of people using their up to date HIV knowledge globally: being able to provide clarity and facts for a person who knows mainly myths. Others are planning to use these skills when they return to their country – as they can now deliver with confidence.

The community testing model using volunteers is cost effective. Comparison of the cited potential cost savings to those of the Community testing model delivered by LASS, immediately highlight the benefits of using this model:

Potential cost savings for 8 new diagnoses are between £2.24 million and £2.88 million with between £7,840 and £14,000 spent to achieve this delivering 556 tests.

Recommendations from the research are as follows;

  • Take the model into different communities and continue to evaluate the benefits.
  • Deliver HIV testing in different community settings on a regular basis to increase accessibility and acceptability, in particular using the outreach van.
  • Research to consider and evaluate the benefits of community HIV testing volunteer training in local communities and with their global connections.
  • Initiate research into how community testing and involvement of people in seeing their blood make the positive result affects acceptance of diagnosis and onward management of HIV. This recommendation is based on observations during the research for already diagnosed HIV positive people.
  • Develop the community volunteer tester model to include testing for other health conditions, for example Hepatitis.

The authors would like to acknowledge the involvement of community testing volunteers and all those involved in organising and delivering the interventions.

Download the full report here.

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World AIDS Day 2011: LASS In The News – ITV1 Julie’s Real Story and Our Free Rapid HIV Testing Service!

We are pleased publish our local advert to promote HIV testing, in our office location in Leicester Town Centre, on Regent Road.

This advert speaks with 15 languages internationally.  This advert cost marginally and considerably less than the Governments 1987 “Tombstone” Advert.

Our message is clear, it is better to know your own HIV status and you can get a HIV test at LASS, and have the result within a minute!

Our team of volunteers have specialist training to provide a free and confidential test, we also have a fantastic support team to provide after-care and further information if required.  We also have established network links so we can refer to more specialist agencies all around Leicester, Leicestershire and Rutland so you can be sure to get expert advice for your needs.

We also have a support group called LhivE, a group of people from Leicester, Leicestershire & Rutland who are living with HIV.  Living with HIV brings a whole set of its own issues and LhivE demonstrate that people living with HIV can lead fulfilling and safe lives with choices.

We hope you like our new advert and hope that you’ll feel comfortable to contact us if you would like a free and confidential test.

The city of Leicester has the fastest-rising HIV rate in the east Midlands and the sixth-highest in the country.

Meanwhile, in 2009/10, national research demonstrated that community testing was effective in delivering tests to those at risk, preventing late diagnosis and thereby reducing onward transmission. As there was no such community testing service in Leicester, we set about creating one!

It is the training of our volunteers which makes the project unique as a method of engaging with specific African communities which are considered to have a high need.  As well as delivering courses to train volunteers to carry out tests among Zimbabwean and Congolese community groups, we also provide a safe and confidential place for people to receive a test.

Our volunteers have created a 50-second advert promoting the value of knowing your HIV status in 15 languages.

We have delivered more than 400 tests, more than half of which are to the BME communities in the region.  While the first phase of the project involved delivering tests only from our building, funding has ensured  we can use our van to take testing to more venues across Leicester, Leicestershire & Rutland.

We were delighted to be highly commended by the Charity Awards, the UK charity sector’s most prestigious awards scheme earlier this year, after being short-listed in the Healthcare & Medical Research category.   This means we have been judged to be of the best 32 Charities in the whole country. Our sincere thanks go to all our service users, volunteers, staff and people in partner organisations who are the real reason we have achieved such a magnificent accolade. Community based HIV testing and our advertisement for this service were the basis of for our application.

WIDESPREAD TESTING IS URGENTLY NEEDED – Health Protection Agency.

The Health Protection Agency (HPA) predicts that unless more focus is given to HIV prevention and routine testing, more people could become infected.

It is 30 years since the first case of HIV was formally diagnosed, and since then there have been several major breakthroughs in medical treatment resulting in longer life expectancy for those infected by the virus.

But some medical experts now believe because of the success of anti viral drugs in prolonging the lives of carriers, it has led to complacency.

HPA figures show that in the last three decades 115,000 people have been diagnosed with HIV in the UK alone, with 27,000 people having gone on to develop full-blown Aids – and 20,000 of those having since died.

We need a complete and wholesome approach to treating HIV and most importantly help prevent its spread – Dr Rupert Whitaker, a long-standing HIV survivor

But what is worrying the medical profession and campaign pressure groups is that, despite all the medical advances over the last three decades, the number of HIV cases in the UK is expected to rise next year to 100,000 and some of those cases will be people who do not yet realise they have been infected by the virus.

Dr Valerie Delpech, Head of HIV surveillance at the HPA, believes widespread testing is urgently needed to help get new cases diagnosed.

“It is so crucial when treating someone who is HIV positive as quickly as possible. That way their lives can be prolonged considerably,” she said.

“Provided someone is tested within the early stages of infection, so they have only had HIV for a short time, and they receive effective medication followed up by effective therapy, then their life expectancy is very good.

“In fact we can safely say HIV is no longer a life threatening illness but a chronic life long condition which if treated correctly can mean people can live to their normal life expectancy.”

LASS are registered for JustTextGiving which enables supporters to make donations of up to £10 by text message.

It’s easy to donate to LASS, and it takes no time at all, simply text: “LASS25 £10″ to 70070.  (You can change the amount of your donation to: £1, £2, £3, £4 or £5 if you prefer) and you’ll receive a text message receipt, and the chance to add Gift Aid by text or in web form.  More details are available from this link.

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HIV Diagnosis Progress Hampered by Inaccurate Online Information

Inaccurate and out-of-date online information about HIV is hampering efforts to improve early diagnosis rates, the National Aids Trust (NAT) has warned.

National AIDS Trust have set up HIVaware.org.uk, run in partnership with Durex.The charity carried out an audit of websites featuring information on HIV and other sexual health issues and found that much information was incorrect or out of date.

NAT chief executive Deborah Jack told GPonline.com that information about symptoms in particular was often inaccurate and represented a ‘missed opportunity’ to improve early diagnosis rates.

‘Given that we know that the majority of new infections are from people who are themselves undiagnosed – many of them at an early stage of infection – this is a real missed opportunity to educate people,’ she said.

‘There is no information about what the most common symptoms are what someone should do if they experience symptoms after putting themselves at risk.’

She said websites often stated that many people have no symptoms of HIV infection for years, even though 70%-90% of people have some symptoms during sero-conversion.

HIVaware.org.uk, will also be contacting publishers of inaccurate online information ‘to identify the content that needs updating and make suggestions as to how it can be improved’.

Ms Jack said the most common area where information was out of date is around testing. A number of sites state that laboratories can only test for HIV antibodies, whereas they can now test for antigens and nearly all clinics use these tests, she said.

Websites also inaccurately stated that there is no point in taking a test for at least three months and that patients need to wait for your test to be sent off to a laboratory to get your results, she said. In fact, antigen tests provide accurate results from four weeks after potential infection and point of care tests, which provide results in 20 minutes, are now being used in a number of settings.

Original Article by Tom Moberly at GPOnline.com

Are you interested in having a HIV test?  We offer a completely free and confidential rapid HIV test and you’ll get the results within 60 seconds from a simple finger prick test. We use the Insti HIV test produced by BioLytical laboratories. The test is 99.96% accurate from 90 days post contact for detecting HIV 1 and 2 antibodies. We also have a mobile testing van which is often out in communities providing mobile rapid HIV tests. Appointments are not always necessary, if you would like a test, please contact us on 0116 2559995

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Increase In Life Expectancy for People Living With HIV

People with HIV have a 15 years longer life expectancy thanks to improved treatments over the past 13 years, according to a new study published on the British Medical Journal website.

Researchers found that the life expectancy of these patients improved significantly between 1996 and 2008, and that earlier diagnosis and timely treatment can increase life expectancy.   HIV infection has become a chronic disease with a good prognosis if treatment begins sufficiently early in the course of the disease and the patient sticks to antiretroviral treatment. However life expectancy for people with the disease is lower than that of the general population.

Researchers led by Dr Margaret May of the University of Bristol’s School of Social and Community Medicine set out to estimate life expectancy of people treated for HIV infection and compare it with that of the UK general population.

They used data from the UK Collaborative HIV Cohort (UK CHIC) study, which in 2001 began collating routine data on HIV positive people attending some of the UK’s largest clinical centres since January 1996.  Patients included in the analysis were aged 20 years and over and started treatment with antiretroviral therapy with at least three drugs between 1996 and 2008.

The researchers studied data on 17,661 patients, of whom 1,248 (7%) died between 1996 and 2008.   Their analysis shows that life expectancy for an average 20-year-old infected with HIV increased from 30 years to almost 46 between the periods 1996-9 and 2006-8.

The findings also show that life expectancy for women treated for HIV is ten years’ higher than for men. During the period 1996 -2008, life expectancy was 40 years for male patients and 50 years for female patients compared with 58 years for men and nearly 62 years for women in the general UK population.   The point at which a person started treatment had an impact on their life expectancy, as the researchers also found that starting antiretroviral therapy later than guidelines suggest, resulted in up to 15 years loss of life.

Doctors use a test to count the number of CD4 cells in one cubic millimetre of blood. A normal CD4 count in a healthy, HIV-negative adult is usually between 600 and 1,200 CD4 cells/mm3.   The researchers found that life expectancy was 38 years, 41 years and 53 years in those starting antiretroviral therapy with CD4 counts less than 100, 100-199 and 200-350/mm3 cells respectively.

The improvement in life expectancy since 1996 was likely to be due to several factors, they say, including a greater proportion of patients with high CD4 counts, better antiretroviral therapy, more effective drugs, and an upward trend in the UK population life expectancy.

They conclude: “Life expectancy in the HIV-positive population has significantly improved in the UK between 1996 and 2008 and we should expect further improvements for patients starting antiretroviral therapy now with improved modern drugs and new guidelines recommending earlier treatment.  There is a need to identify HIV-positive individuals early in the course of disease in order to avoid the very large negative impact that starting antiretroviral therapy at a CD4 count below 200 cells/mm3 has on life expectancy.”

Dr Mark Gompels, lead clinician and co-author, North Bristol NHS Trust, said “These results are very reassuring news for current patients and will be used to counsel those recently found to be HIV-positive.”   In an accompanying editorial, researchers in Boston argue that, although these gains are encouraging, they have not been seen in everyone with HIV.

Nevertheless, this study “serves as an urgent call to increase awareness of the effectiveness of current HIV treatments in patients and providers,” they say. “In turn this should increase rates of routine HIV screening, with timely linkage to care and uninterrupted treatment. As these factors improve, the full benefits of treatment for all HIV infected people can be realised.”

The study also finds that women with HIV could expect to live a decade longer than men with HIV, perhaps because women are tested for HIV during pregnancy and are likely to start treatment earlier.

The data
  • Data on 17,661 patients, of whom 1,248 (7%) died between 1996 and 2008
  • Life expectancy for the average 20-year-old with HIV increased from 30 to almost 46 years between the periods 1996-9 and 2006-8
  • Life expectancy for women treated for HIV was 10 years’ higher than for men
  • Starting anti-retroviral therapy later than guidelines suggest resulted in up to 15 years’ loss of life
Dr. Anthony Fauci explains how advances in treatment research have dramatically increased the life expectancy for those infected with HIV.

The Terrence Higgins Trust says people at risk should get tested now.  Figures suggest more than 80,000 UK are living with HIV, and about 25% are unaware they have the infection however, it’s good news for people with HIV, their families and friends.

Sir Nick Partridge (CEO of THT) said: “It also demonstrates why it’s so much better to know if you have HIV. Late diagnosis and late treatment mean an earlier grave, so if you’ve been at risk for HIV, get tested now.   Of course, it’s not just length of life that’s important, but quality of life too, and having HIV can still severely damage your life’s chances.   While so much has changed 30 years on from the start of the epidemic, condoms continue to be the best way to protect yourself and your partner from HIV in the first place.”

Are you interested in having a HIV test?  We offer a completely free and confidential rapid HIV test and you’ll get the results within 60 seconds from a simple finger prick test. We use the Insti HIV test produced by BioLytical laboratories. The test is 99.96% accurate from 90 days post contact for detecting HIV 1 and 2 antibodies. We also have a mobile testing van which is often out in communities providing mobile rapid HIV tests. Appointments are not always necessary, if you would like a test, please contact us on 0116 2559995

Original Articles via BBC News and the British Medical Journal

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