Statement from the All Party Parliamentary Group on HIV and AIDS on the announcement that Lord Speaker will be stepping down earlier than planned.

Statement from the All Party Parliamentary Group on HIV and AIDS on the announcement that Lord Speaker will be stepping down earlier than planned.

Today the Lord Speaker announced he will be stepping down early as Lord Speaker in the House of Lords to focus on campaigning on HIV/AIDS and other issues.  

Lord Speaker has been a long standing member of the APPG on HIV and AIDS.   In the 1980’s, as Health Secretary he launched the Don’t Die of Ignorance campaign in 1986, a campaign to educate people about HIV and AIDS. 

Around the world we have lost the lives of around 35 million people since the onset of that pandemic and tragically in 2019 we saw 1.7 million new transmissions and 690,000 deaths globally of a HIV and AIDS related illness. Moreover, there are examples beyond count of the persecution of LGBT people worldwide. As the APPG has reported there are a number of barriers stopping marginalised groups around the world accessing testing, prevention and HIV services.

We look forward to working with Lord Fowler to campaign to end new transmissions of HIV and to ensure a better quality of life for those living with HIV.

Stephen Doughty MP - Chair:

Since the 1980’s Lord Speaker has been a true friend to the APPG and the fight against HIV here in the UK and Globally.

He knew when he launched the Don’t Die of Ignorance campaign, that it was essential to educate people about HIV and AIDS as it was a killer.  Thankfully today with huge advances in testing and treatment we know that we can prevent new    infections.  We also know if someone living with HIV is on effective treatment, they Can’t Pass It On. But we still face huge challenges. 

We look forward to working with the Lord Speaker to ensure we end new transmissions of HIV by 2030, tackle the stigma around HIV and that people living with HIV have a better quality of life and that the UK continues to be a leader in the fight against HIV Globally.”

Baroness Barker MP – Vice Chair

“Lord Speaker has been a long standing member of the APPG on HIV and AIDS.  He has been a true fighter against the disease since the 1980’s.

We say welcome back Lord Speaker”

Lord Guy Black of Blackwood – Vice Chair

“Lord Speaker saw the impact first-hand and knew then the devastating impact that was portrayed in Channel 4 It’s A Sin.

I look forward to working with him on the APPG on ending new transmissions of HIV.”

‘Test, Test, Test’ is the way to fight HIV

‘Test, Test, Test’ is the way to fight HIV

Today the All Party Parliamentary Group HIV/AIDS launches an inquiry into HIV testing in the UK.

Increased HIV testing is the only way to find the 6,700 people living undiagnosed with HIV in the UK. This was the main recommendation of the HIV Commission published two months ago. However, data released by the Terrence Higgins Trust to mark England’s National HIV Testing Week, showed just one in five people have ever tested for HIV. Interpretation of the figures shows a more troubling situation: testing among heterosexual people is just 16% while 58% of LGBTQ+ respondents.  

The APPG on HIV AIDS will be conducting a root and branch look at what is happening across the UK when it comes to HIV testing – online home testing, testing in sexual health clinics and mainstreaming testing across the NHS. The inquiry will look into what works, what could be improved, and how we can ensure missed opportunities to test for HIV are a thing of the past. 

If anyone is interested in providing evidence to the inquiry, they should visit our website for further details: https://www.appghivaids.org.uk/hiv-testing-inquiry

Stephen Doughty MP, Chair of the APPG on HIV/AIDS, said:

“Despite all the progress made in the fight against HIV, there is still a shockingly high number of people who remain undiagnosed and even more have never tested for the virus. We need to find all of those undiagnosed urgently if we are to prevent new infections, and that requires a redoubling of all our efforts

“Far too many people are missing out on opportunities to test for HIV. This ranges from a fear of having a test or simply not being offered a test when accessing healthcare.

“This inquiry will leave no stone unturned and ensure the missed opportunities to test for HIV are a thing of the past.”

"In 2019, over half a million eligible people were not tested for HIV in sexual health services. Over 4 in 10 people diagnosed with HIV are still diagnosed late."

Baroness Barker Vice Chair Said:

“The most recent figures show a shocking number of people not offered a HIV test – they are disproportionately women and women of colour. This must change the APPG on HIV/AIDS latest inquiry will work out why. It will inform the HIV Action Plan and ensure this does not persist.  .  

“With late diagnosis rates across the UK remaining stubbornly high we need to learn a simple lesson: every late diagnosis is a story of missed opportunity to test.”

Ian Green Chief Executive of Terrence Higgins Trust said:

“Only testing will find those living undiagnosed with HIV, allow them access to treatment and will stop onward transmission of the virus. For these reasons ‘test, test, test’ was the main recommendation of the HIV Commission. The need to normalise this testing across the NHS is key – whether that be when people present at A&E, register for a GP or when the NHS is otherwise taking blood. Together we can improve online testing, it's availability in services we already use and in all the services where we need PrEP prevision to cut health inequalities and stop HIV transmission – this inquiry will do just that and is most welcome.”

APPG Inquiry HIV and COVID 19 | Call for written evidence

We are currently in the midst of a once in a century event, the COVID-19 global pandemic. The virus currently has no vaccine and no effective treatment and has spread across the world with a speed and ferocity that no health system has been able to prepare for. We have seen one of the richest countries in the world, Italy (average income, US$34,480) struggle to cope under the strain, while China (average income, US$9,770), conversely, has been able to control its epidemic and provide “aid” in the form of medical supplies and experts to the technically “developed” nations.

As the UK Government struggles to secure supplies for our health system, the APPG on HIV and AIDS would like to ensure that the other major pandemic – HIV – is not deprioritised, internationally or domestically and better understand the impacts of COVID-19 on the HIV response.

Since the pandemic emerged, we have had representations from the domestic HIV charities raising concerns about employment, the disproportionate impact on black and ethnic minority communities and concerns around the Department for Health Social Care advice for people living with HIV regarding COVID. Internationally focused HIV non-governmental organisations (NGOs) have also raised concerns about the impact of COVID-19 on people living with and affected by HIV in developing countries, the short and long term impact on health financing and equitable access to new and existing health technologies to fight COVID-19.

We would like to hear more from charities and NGOs both here in the UK and internationally about how COVID-19 is affecting the HIV response, and what is needed to address concerns or failures by governments and the global health institutions responding to COVID-19. We are particularly concerned about the impact of COVID-19 in Sub Saharan Africa on people living with HIV as this is where the HIV epidemic is most concentrated. However, we would also like to hear from people living with and affected by HIV and people from key populations in other geographies who may be struggling to access healthcare at this difficult time.

This inquiry is intended to raise awareness of the struggles that people living with and affected by HIV may be facing around the world in the immediate circumstances and contexts created by COVID-19 where many countries are in “lockdown” or movement is severely restricted. We would like to hear personal stories about how this is affecting people accessing medication, prevention, care and support and the impact on general wellbeing as well as information on the wider impacts and general adherence to HIV medication. We are particularly keen to hear whether human rights are being respected and the 5 principles as outlined by STOPAIDS are being upheld (see below). We plan to hold a more in-depth inquiry into the longer-term effects of COVID-19 on the HIV response at a later stage.

Please use the questions below to inform your response and send to Susie Pelly at pellys@parliament.uk by 5pm 19th June 2020. Please submit your response in Word format and number your paragraphs. Please also include a short description of the organisation you work for or whether you are writing in a personal capacity and include your contact details (email, address, phone number) and whether you would be happy to be contacted to participate in oral evidence sessions via zoom.

 Questions for all responding

1.     Has access to HIV prevention, treatment and care services been affected by COVID-19? If so, can you tell us how?

2.     Is there evidence to suggest that COVID-19 is affecting adherence to HIV medication or treatment for co-morbidities? Please explain

3.     Are there any concerns that undiagnosed HIV could become an issue during the pandemic because of reduced health service availability? What is being done to address this?

4.     What are the main concerns being voiced by people living with HIV during this pandemic?

5.     Mental health is being impacted for many people during this crisis, are people living with HIV disproportionately impacted and if so, what mental health support are they able to access?

6.     What employment issues are people living with HIV having in relation to COVID-19?

7.     Has access to HIV treatment, care and support services been affected by COVID 19? If so, can you tell us how?

8.     Is there any evidence to suggest that COVID 19 is affecting adherence to HIV medication? If so, why is that the case?

9.     Has access to HIV prevention interventions/services, including testing, been affected by Covid 19? If so, can you tell us how?

10.  Are there any concerns that undiagnosed HIV could become an issue during the pandemic because of reduced health service availability?

Questions for those responding from and on the impacts in low and middle-income countries

1.     Have there been any reports of human rights abuses in relation to COVID-19? If so, why do you think this is happening and what could be done to mitigate these issues?

2.     What is happening with internationally funded HIV programmes during the pandemic?

3.     Are there any lesson from the HIV response that global institutions like the World Health Organisation should take into consideration in developing its global response?

Questions for those responding from and on the impacts in the UK

1.     Why are BAME communities disproportionately affected by COVID-19 and is this effect more acute for BAME people living with HIV?

2.     What are the main concerns being voiced by people living with HIV during this pandemic?

3.     What employment issues are people living with HIV having in relation to COVID 19?

4.     How has your organisation adapted its HIV services and the work it does during this COVID 19 crisis?

5.     Has COVID 19 had a financial impact on your organisation or do you think it will? Are the government measures sufficient?

6.     When we move towards a gradual easing of COVID-related social measures, what do you think the priorities are for the Government around HIV?

7.     During the COVID-19 pandemic, what further measures need to be put in place to retain the UK’s progress in surpassing the UNAIDS 90-90-90 targets?

APPG on HIV and AIDS and COVID 19

The APPG on HIV and AIDS is monitoring the situation regarding COVID 19 carefully and will continue to function remotely. We remain a central contact point for HIV charities and stakeholders with Parliamentarians. We will do our best to ensure the rights of people living with HIV are upheld during this difficult period, both domestically and globally.

For more information about what to do if you are HIV positive and how to protect yourself during the COVID 19 pandemic, you can visit the NAT website: https://www.nat.org.uk/coronavirus-hiv

Stay Safe.

MENTAL HEALTH SERVICES FAILING PATIENTS WITH HIV

- APPG: Mental health services for people with HIV in England are failing to meet the needs of this particularly vulnerable group of people who are twice as likely to experience mental health difficulties as the general population.

According to a report launched today by a cross-party group of parliamentarians on HIV and AIDS, failure to address the mental health needs of people with HIV could negatively impact on progress towards ending the epidemic and is leading to increased infections.

The report “The Missing Link: HIV and Mental Health” highlights that in England:

• People living with HIV are twice as likely as the general population to have a mental health illness in their life-time but nearly 40% of HIV clinics do not have access to a psychological or mental health professional within their multidisciplinary teams (MDTs).

• Mental health support is proven to increase adherence to HIV medication by 83% in people with depression. Despite the clear public health benefits to treating mental health issues in people living with HIV, it is generally not until people experience more severe mental health symptoms that specialised HIV services are provided.

• In the past HIV support services have provided psycho-social support for people who are newly diagnosed or struggling to cope with their HIV diagnosis. Many of these services have been decommissioned leaving people no choice but to access generic services for their mental health needs associated with their HIV diagnosis. There is no evidence that these services are effective for people living with HIV and the APPG is concerned that in their current form, they are not fit for purpose.

• Young people who have acquired HIV from birth are particularly vulnerable to mental health crises for a number of reasons and there is great concern that as adolescents are moved into adult services where there is less specialised care, they are at a trigger point for a mental health crisis.

• Benefit reviews are leading to mental health issues and suicides in people living with HIV as a direct result of assessors not understanding the psychological effects of stigma, mental health issues and HIV.

• People with chemsex addiction are falling through commissioning gaps as drug and alcohol services are commissioned by local authorities but do not necessarily treat specific chemsex drugs or associated mental health issues and mental health services are commissioned by Clinical Commissioning Groups (CCGs) but do not provide addiction services.

Chair of the APPG on HIV and AIDS Stephen Doughty MP said:

“Mental health is the big elephant in the room that we need to start talking about if we are serious about getting to zero HIV infections by 2030.”

“This inquiry shows very clearly that in England mental health services need to be tailored to people with HIV who have specific issues around stigma.  Generic services are not currently fit for purpose. With HIV support services under threat from local authority cuts it is vital that specialist mental health services are provided through HIV clinics and unfortunately this is not the case. Services are available but not across the whole country so, once again, it is a postcode lottery whether you will receive the care you need or not. While we looked specifically at England, there are lessons and findings we hope will be useful to devolved Governments in Scotland, Wales and Northern Ireland too.”

“This report has come at a pertinent time with the threatened closure of the Mildmay Hospital, one of the world leading providers of psychiatric services for people with HIV because of issues around commissioning. We cannot allow failures in the structure of the health service to get in the way of providing life-saving care.”

“We heard some really disturbing evidence about patients who have committed suicide because of stigma and the traumatic process of navigating the benefits system while grappling with HIV and mental health issues. There really needs to be greater understanding of the impact on mental health of living with a long-term stigmatised health condition like HIV and this should be reflected in a new national HIV strategy.”

Paul Farmer CBE, Chief Executive of Mind said: 

“We welcome the APPG’s focus on HIV and mental health and the recommendations in the report. Our mental and physical health are closely linked and we can’t treat them in isolation. This report makes clear the importance of making sure someone with a long-term condition like HIV gets the right support for their mental health too.

“As well as highlighting the changes we need to see from health services, we were pleased to see recognition of the impact other factors – such as housing, benefits, finances and employment – can have on both our physical and mental health. Only by adopting a cross-government approach to mental health will be able to improve the experiences if people with mental health problems. We hope this report goes some way towards making that ambition a reality."

You can find a link to the report here

Stepping up the fight to end AIDS, TB and Malaria

The APPG on HIV and AIDS is delighted by Saturday’s announcement from the Government that they will be giving £1.4 bn to the Global Fund to Fight AIDS, Malaria and TB at this September’s replenishment conference.

Following our joint reception last week with the APPGs on TB and Malaria where Michael Sheen and Charlie Webster spoke passionately about the importance of UK aid to the Global Fund, the Secretary of State wrote to the Chairs of the three APPGs to announce this important decision.

The reception was a celebration of the Global Fund’s amazing success. In 2000 just 2 million people living with HIV were on treatment, today 22 million people are. Other speakers included the three APPG chairs, Stephen Doughty MP, Jeremy Lefroy MP and Nick Herbert MP, the Minister Andrew Murrison MP and Maurine Murenga - a Global Fund advocate who spoke about how the Fund has saved her life - Executive Director of the Global Fund, Peter Sands and shadow international development Minister Dan Norris.

Andrew Murrison, the Minister for International Development highlighted that what characterised the event was the personal nature of all of the speeches. Everyone’s lives have been touched in different ways by these 3 diseases and all of those present at the event were passionate advocates for the excellent work of the Global Fund. They also highlighted that we need to step up the fight in order to finally end these diseases of inequality and ensure that our progress to date does no start going in reverse. Stephen Doughty MP said:

“We cannot ignore the fact that there are over 1000 new infections a day amongst women of reproductive age and that AIDS is still the biggest killer of that particular group. HIV is an illness that disproportionately affects the poorest and most vulnerable people in society with 50% of new infections amongst the most marginalised groups – men who have sex with men, transgender people, sex workers and people who use drugs. 

 In our latest report “No One Left Behind” we called on the UK Government and Global Fund to increase their support of these groups in the HIV response. HIV should not be a death sentence for anyone and in countries where marginalised groups are prevented from accessing treatment and support, it is vital that the Global Fund can step in and bridge that gap.”

On Monday this week, Chair of the APPG on HIV and AIDS Stephen Doughty MP, once again raised the importance of UK aid in a debate in the House of Commons where he commended the UK Government’s decision to pledge £1.4bn to the Global Fund.

The UK’s early and ambitious pledge is a strong signal to other donor countries and we hope to see them make equally ambitious announcements at the upcoming conference.

Left to right: Jeremy Lefroy MP, Stephen Doughty MP, Minister for International Development Andrew Murrison MP, Michael Sheen, Charlie Webster, Rt Hon Nick Herbert MP, Peter Sands, Dan Norris MP, Maurine Murenga

APPG Chair Stephen Doughty MP calls on the UK Government to reform the drug industry

Stephen Doughty MP

In a year when the British government should be working to secure progress towards universal health coverage, they are failing to champion access to life-saving medicines globally.

The Italian government has put forward a draft resolution to improve the transparency of markets for drugs, vaccines and other health-related technologies, to be discussed at the World Health Assembly in 10 days’ time.

The resolution sets out an ambitious but practical plan to make clinical trial data and drug pricing, research and development investment – including public contributions – and progressively more transparent. The aim is to improve access to information and therefore strengthen the state’s position when negotiating with industry on what they pay for medicines.

Pharmaceutical companies currently have the upper hand when negotiating drug pricing, which can lead to market failures such as low- and middle-income countries paying more than high-income countries for certain medicines. For example, north African countries were paying more for Pfizer’s PCV13 pneumonia vaccine than France.

Globally,100 million people a year are being pushed into poverty because of out-of-pocket healthcare expenses. While gains have been made in reducing the price of some treatments, new therapies for HIV, tuberculosis, hepatitis C, diabetes and cancer remain prohibitively expensive.

In Access Denied, a report by the all-party parliamentary group on HIV and Aids, we highlighted the market failures that have led to a lack of investment in paediatric HIV medicines. Children living with HIV in the poorest parts of the world should be a clear priority, but the nature of the research and development system discourages investment. It is this kind of market failure that the World Health Organization (WHO) is attempting to rectify with the draft resolution.

The lowest price for bedaquiline, a new tuberculosis medicine, is $400 (£308) for a six-month course. But the drug must be taken as part of a £928 regimen that is unaffordable for many low- and middle-income countries. Because of its high price, only 20% of people in need of bedaquiline have received access to it – even though the drug was financed by philanthropic and public funding sources, including from the UK.

Similarly, Herceptin – a breast cancer treatment largely funded by the British taxpayer, according to a report by StopAids and Global Justice Now – costs £19,418 in Peru, even though the country’s GDP per capita sits at £5,021.

The draft resolution has 10 co-sponsors so far. However, some northern European countries, including the UK, are reportedly attempting to water it down.

Last month, 35 cross-party MPs joined me in calling on the British government to support this WHO resolution. It is disappointing that the UK is seemingly more inclined to listen to pharmaceutical lobby groups rather than patients, civil society organisations and elected MPs. I have written to Matt Hancock, secretary of state for health and social care, asking for an urgent review of the UK’s position on the resolution.

There is a second consultation on the resolution taking place for member states at the WHO on Friday. The UK government should positively engage and support this resolution as a practical way to tackle high drug prices, creating a more just and equitable research and development system for all.

• Stephen Doughty MP is chairman of the all-party parliamentary group on HIV and Aids. He has been leading parliamentary actions on the resolution

APPG on HIV & AIDS writes to the Secretary of State for Health and Social Care about access to HIV medicines in the event of a "no deal" Brexit

Earlier this year the APPG on HIV & AIDS wrote to the Secretary of State for Health and Social Care about access to HIV medicines in the event of a “no deal” Brexit amid concerns that a new government regulation - the serious shortage protocols - would allow pharmacists to change prescriptions in the event of medicine shortages.

Civil society organisations contacted the APPG about their concerns regarding the lack of consultation on the impact of these protocols on people living with HIV and highlighted that only an HIV consultant is qualified to alter a patient’s HIV medication safely.

We raised these concerns and asked for a full outline of the Government’s strategy for ensuring access to HIV medicines after Brexit. You can see the Government’s full response below.

The APPG on HIV and AIDS and APPG on Mental Health Call for Written Evidence on HIV and Mental Health

The APPG on HIV and AIDS and APPG on Mental Health are putting out a call for written evidence as part of an inquiry into HIV and Mental Health in England.

According to the National Institute for Mental Health and Public Health England’s most recent (2018) report on the HIV epidemic in the UK, people living with HIV are twice as likely to have anxiety and depression compared to those who are not living with HIV. Some forms of stress can contribute to mental health challenges for people living with HIV, including:

• Having trouble getting the services you need

• Experiencing a loss of social support, resulting in isolation

• Experiencing a loss of employment or worries about whether you will be able to perform your work as you did before

• Making decisions about whether and how to tell others about your status

• Managing your HIV medicines

• Going through changes in your physical appearance or abilities due to HIV/AIDS

• Dealing with loss, including the loss of relationships or even death

• Facing the stigma and discrimination associated with HIV and AIDS

Submissions to the inquiry should be sent to Susie Pelly by email at pellys@parliament.uk by 5pm on 5th April 2019. If you have any questions about the terms of reference please contact the Policy Advisor to the APPG on HIV and AIDS Susie Pelly at the same email address as above. Submissions are welcome from all people and organisations with an interest in HIV and mental health. Please clearly outline the organisation if applicable you work for and your contact details.

To read the full terms of reference for the inquiry including questions to guide your submission please click on link below.

Minister Burt responds to the APPG on HIV and AIDS report "No One Left Behind"

In November Minister Burt sent a written response to the APPG on HIV and AIDS in response to our report “No One Left Behind: towards a sustainable HIV response for key populations and women and girls”, outlining DFID’s plans to address some of the concerns raised by the report.

We are pleased that DFID is establishing “working principles on how we transition our work in-country”. We will be working with DFID to ensure these working principles adequately address the needs of People Living with HIV.

The Minister’s response also highlights that in many countries, political will is the biggest barrier to access to services for People Living with HIV, rather than external financing. The APPG will continue to work with DFID and the FCO to ensure these political barriers are tackled effectively.

We are delighted that the Government has increased their contribution to the Robert Carr Network Civil Society Networks Fund - one of the key asks in our report and welcome the MInister’s response to our inquiry. To read the letter in full please click on the link.