For longstanding haemophilia campaigners that lived through and researched the emergence of the AIDS virus in the early 1980s, it is impossible to forget the delays and denials regarding plasma safety and the alleged incompetence and negligence in terms of donor selection policies and protecting each nation’s blood supply. During the 1970s and 80s, thousands of UK haemophiliacs were infected with HIV and hepatitis viruses through contaminated blood after receiving pooled plasma products named factor concentrates used in the treatment of their inherited bleeding disorder. Some families mourned the loss of multiple relatives as they died of AIDS and liver disease. The contaminated blood scandal is now the subject of the Infected Blood Inquiry chaired by Sir Brian Langstaff.
During the 1960s and 70s, US pharmaceutical companies relied heavily on the use of plasma collected in the poorest areas of Haiti and Central American countries such as Nicaragua and Belize and turned a blind eye to the over bleeding and exploitation of donors selling their blood for a few dollars to feed their families or for their next drug fix. The process of plasmapheresis meant one donor could be bled 104 times each year. Plasmapheresis is described by Healthline as “a process in which the liquid part of the blood, or plasma, is separated from the blood cells. Typically, the plasma is replaced with another solution such as saline or albumin, or the plasma is treated and then returned to your body”
The New Scientist stated in 1975, “as Professor Titmus (author of The Gift Relationship, 1971) highlighted, ‘authorities have drawn attention to the fact that the purchase of blood attracts many alcoholics and other unfortunates who return frequently to blood banks and who know they will be deprived of money if they answer yes to questions about jaundice, malaria, other infectious diseases and hypersensitivity.'”
As time moved on and collection practices in Central America came under closer media scrutiny, public pressure led to the closing of these clinics and a move to focus on new donor communities in the US. Blood collection thrived in American skid row clinics opening up along the US/ Mexican border and the run down areas of inner cities. Pharmaceutical companies turned their attention to utilizing the blood of prison donors and gay men were actively encouraged to donate. Bleeding donors considered high risk for hepatitis viruses became the norm as more and more safety rules were violated.
UK haemophiliacs born with an inherited bleeding disorder where the blood does not clot effectively were reliant on treatment which contained the missing clotting factors. In the 1960s and 70s, haemophiliacs were treated with cryoprecipitate made from a small number of carefully screened British donors. The UK, unlike the US, had a volunteer donor system where people gave blood for altruistic reasons as opposed to financial gain and the British blood transfusion service was considered one of the safest in the world. The level of risk to haemophiliacs all changed in 1973 with the introduction of the so called “miracle” treatment, factor concentrates made from the pooled plasma of thousands of donors and so began the licensing of imported US factor concentrates.
For this particular article the focus is on the use of gay donors and bisexual donors and identify as men who have sex with men (msm). Advertisements published in the US in the gay magazines of the early 1980s show image after image inviting gay men who have had hepatitis B to donate. There was great interest in studying them for a vaccine… however there was also a disaster waiting to happen when the surplus of this so called “hepatitis rich” plasma (of men who sometimes infective) was added to the plasma pools used in the manufacture of factor concentrates.
Don Francis is an American epidemiologist whom this author met in Washington DC in 2009. Francis was at the centre of the emergence of the AIDS virus from 1981. He worked at the Centre for Disease Control and realizing very early on that evidence indicated AIDS was blood borne understand clearly the risk to haemophiliacs receiving plasma products. Blood was often collected in plasma wagons parked outside the bath houses in the Tenderloin area of San Francisco and also from men who took the opportunity to participate in unprotected sex with other men in cubicles even as they waited to sell their blood in US prisons such as Arkansas State Penitentiary. American documentary maker Kelly Duda looked at prison safety violations in his film, Factor 8:The Arkansas Prison scandal.
The link between gay men donating their hepatitis rich blood (hepatitis B being an early marker for the AIDS virus) and the danger to haemophiliacs of becoming infected drove Francis to highlight the need to exclude gay men from donating blood, not to judge their sexual preference but to safeguard the blood supply. What Francis faced however, (portrayed in the film And The Band Played On by actor Matthew Modine) was denial from the pharmaceutical companies and blood bankers unwilling to upset the “gay lobby” and risk unfounded accusations of “homophobia” so they delayed taking action even as the first cases of AIDS emerged in US haemophiliacs that received their blood.
So where did AIDS come from? A History of AIDS, states, “scientists have traced the origin of HIV back to chimpanzees and simian immunodeficiency virus (SIV), an HIV-like virus that attacks the immune system of monkeys and apes.”
Francis described to me at our hotel on Capitol Hill, the moment when he banged his fist on a table in anger and frustration famously asking “how many more have to die” before action was taken to remove gay men from selling their blood albeit wanting to help others but ultimately infecting recipients of their plasma with HIV and hepatitis viruses. In contrast to plasma pools of 20,000 in the UK, plasma pools in the US could reach as high as 400,000 donors as highlighted in Congressional Hearings, add to that the targeting and bleeding of gay men emerging from the bath houses and you were virtually guaranteeing infection.
In a May 1983 article in the Bay Area Reporter, Mike Hippler reported that,
“no one knows what causes AIDS, [but] many are afraid that, like gonorrhea and syphilis, it is communicable, and therefore the baths have come to represent a potential source of contamination. But are the baths a danger zone? … fucking around at the baths, or anywhere is a risk factor, but not a proven cause, says Dr. Dritz (of the San Francisco Department of Health’s Communicable Diseases Department.) But the more intimate contact you have with people, the more chance you have to pick up something from those people, (gay men)’” While individuals for and against closing the bathhouses waged war in the newspapers throughout 1983, 72 San Franciscans died of AIDS complications. Every year the numbers increased. There was panic, from within the queer community and more damagingly from without.”
One gay man contributing his oral history to a San Francisco archive highlighted that before HIV testing was introduced, he would donate blood as a way of demonstrating to others that he was not infected and avoid any stigma associated with being gay. He failed to say whether he was later found to be incubating the AIDS virus or not?
Thousands of haemophiliacs were infected with hepatitis B, C and HIV around the world from US factor concentrates and went on to die as a result of the use of virally high-risk donors and the failure to act quickly enough in removing gay donors among others from the plasma pools. Although there were some early documented cases of AIDS in the UK where haemophiliacs were exposed to the blood of volunteer gay blood donors carrying the AIDS virus, it was much smaller compared to the risk from imported factor concentrates made from the pooled plasma of hundreds of thousands of high risk remunerated donors. Francis can be viewed discussing that time on the following link,
Don Francis Pillars of Democracy, Tainted Blood video
CPAC October 19th, 2017
Fast forward 40 years to the 2022, is blood safety still of concern to haemophiliacs?
There has certainly been considerable progress with the widescale introduction of viral inactivation, heat treating blood products and the use of recombinant synthetic clotting factor instead of a total reliance on human plasma derived products. There is also the emerging world of gene therapy. However haemophiliacs are not out of the woods yet. This author was interested to read the following in an article titled, “Plasma or Recombinant products for Hemophilia?” from Ash Clinic News in the US published in 2018, where young children were still being prescribed plasma products, as follows,
The other point I make when explaining plasma-derived products to new patients is that plasma products could reduce their risk for developing inhibitors – an extremely serious complication of hemophilia.
The patient population that I would recommend plasma-derived products to are what we call PUPs, or “previously untreated patients.” That recommendation is based on data from the Survey of Inhibitors in Plasma-Product Exposed Toddlers, or SIPPET trial, that was presented as a plenary abstract at the 2015 American Society of Hematology Annual Meeting and later published in The New England Journal of Medicine.2,3 In SIPPET, we investigated whether the development of inhibitors was related to the type of concentrate used for factor replacement therapy. Of 251 PUPs with hemophilia A enrolled, 125 were assigned to receive plasma-derived FVIII–containing von Willebrand factor (vWF), and 126 were assigned to receive recombinant FVIII with no vWF.
We found that PUPs treated with plasma-derived products had about a 50 percent lower rate of developing inhibitors, compared with those treated with recombinant factors.3 Based on these data, I think the target population for plasma-derived products would be pediatric PUPs, because we want to do whatever we can to limit or prevent the number of inhibitors that occur in patients with hemophilia.
Dr. Dunn: However, treating patients with plasma-derived products requires much higher volumes of products for infusion, compared with recombinant products, which only require a couple milliliters of concentrate. So, if I’m treating pediatric patients, who have tiny blood vessels, with plasma products, I might need to use central venous access devices to deliver the higher volumes of plasma necessary. Implanting a central venous access device, though, means major surgery, which introduces risks associated with anesthesia, infection, and the device itself. If I can ever avoid surgical procedures in patients with hemophilia, I certainly want to do that. I can infuse smaller-volume recombinant products more easily through peripheral veins in pediatric patients.
Dr. Young: The other instance when I would prefer plasma-derived products is in patients who have already developed inhibitors. We also use plasma concentrates when we perform immune tolerance induction therapy, in which we give repeated doses of FVIII to try to eradicate inhibitors.
So not every haemophiliac is receiving recombinant. Some haemophiliacs still receive human factor concentrates which may be related to inhibitors, personal preference or efficacy as some haemophiliacs feel plasma derived products work better for them than recombinant. In addition, haemophiliacs may require whole blood like the rest of the population for accidents, joint operations and liver transplants for those infected with hepatitis C. So we must be ever vigilant regarding blood safety. The haemophilia community and their families are not generally scientists though there may be individual exceptions so are reliant on others to monitor the safety of the blood supply. However through lived experience those that have survived and their loved ones are always looking out for the next virus… to quote former Health Minister Lord Owen, “its not if a new virus comes along but when” and the v CJD prion for example can’t be eradicated in the same way as HIV and hepatitis viruses. In the case of monkeypox now emerging, it is not even a new virus but one that is not often seen outside of west and central Africa and which in the latest infections does not appear to be following its usual pattern/spread of the virus.
The NHS advice regarding “How do you get monkeypox” can be read here as follows:-
How you get monkeypox?
Monkeypox can be caught from infected rodents (such as rats, mice and squirrels) in parts of west and central Africa.
You can catch monkeypox from an infected animal if you’re bitten or you touch its blood, body fluids, spots, blisters or scabs.
It may also be possible to catch monkeypox by eating meat from an infected animal from central or west Africa that has not been cooked thoroughly, or by touching other products from infected animals (such as animal skin or fur).
Monkeypox can also spread from person to person through:
- touching clothing, bedding or towels used by someone with the monkeypox rash
- touching monkeypox skin blisters or scabs (including during sex)
- the coughs or sneezes of a person with the monkeypox rash
As the well respected Nam AIDSMAP pointed out on the 25th May, “the World Health Organization (WHO) has now confirmed nearly 100 cases of monkeypox in over a dozen countries, with the largest number in the UK”. Although it is emphasized that “anyone can catch the virus through close personal contact” the publication also states,
Cases so far have “mainly but not exclusively been identified amongst men who have sex with men,” according to WHO. Among the Global.health cases with a known sex and age, all but three are young or middle-aged men. Many of the affected men identify as gay or bisexual or sought care at sexual health clinics. Several cases are reportedly linked to a sauna in Spain and a fetish festival in Belgium. Many of the men reported recent international travel.
There are now estimated to be around 179 cases in the UK alone and CNBC reports, “globally, 555 confirmed and suspected cases have now been reported in countries outside of Africa.” New guidelines issued are as follows,
- U.K. health authorities have urged anyone who tests positive for the monkeypox virus to abstain from sex until their symptoms have cleared.
- The U.K. Health Security Agency also recommended that previously infected persons continue to use condoms for a period of eight weeks after the virus has passed to combat rising cases.
It is important to warn men who have sex with men to monitor their health, be aware of the symptoms of monkeypox which can be found on the link below and follow public health advice on reporting and isolating should suspected infection be present.
This is particularly important as Pride months is coming up and this is addressed in an article by Helen Bransworth for StatsNews
“Health officials scramble to raise monkeypox awareness ahead of Pride Month”
But what of blood safety? Who is addressing that? Is there a risk of transmission via blood and blood products and if so how big is that risk? This author is yet to see any comment with regard to blood donation and monitoring blood safety.
The US and the UK were notoriously slow to act on AIDS, especially when it came to excluding gay donors, putting sensitivities over blood safety. This cannot happen again. The public need to know whether donor guidelines need to be reviewed with the new monkeypox cases? Is there a test for monkey pox regarding blood and is it in place? Are there ways of ensuring monkey pox is not present in the blood supply? Would current viral inactivation techniques completely elimate monkeypox?
This author has submitted initial questions to the Department of Health and Social Care and discussed her concerns with fellow haemophilia campaigner Colette Wintle and Kate Burt, CEO of the national Haemophilia Society who can raise questions directly with The Advisory Committee on the Safety of Blood, Tissues and Organs (SABTO) that quote, “advises UK ministers and health departments on the most appropriate ways to ensure the safety of blood, cells, tissues and organs for transfusion/transplantation.” The SABTO website can be viewed on the following link,
For many years there was a blanket ban on msm donating blood but that has recently been lifted in many countries including the UK. Haemophiliacs and their families among the most infected and affected by AIDS through blood and blood products were furious to find out that discussions leading up to the reversal on the ban on gay men donating had excluded them and their representatives from contributing to the ongoing debate over blood safety. Details of the changes and new blood donor guidelines are on the following link,
Landmark change to blood donation eligibility rules on today’s World Blood Donor Day (Blood News, 14th June, 2021)
Men who have sex with men (MSM) NHS Blood Donation
There is a fear that once again anyone questioning or challenging the current practice of accepting blood from msm will once again be viewed as “homophobic” as opposed to expressing concern over whether current safety practice is adequate and ensuring the safest possible blood supply.
This author has submitted the following questions to the Department of Health on the 21st May 2022,
1) Under a Freedom of Information request, how many cases of monkeypox are in men who have sex with men that have already been immunocompromised with HIV infection?
2) What precautions are the UK taking to protect the national blood supply from monkeypox given that the government recently reversed blood safety policy to include men who have sex with men as blood donors?
Name and address supplied
This was followed up with further questions on the 23rd May 2022 as follows:-
Dear Sir Madam,
I am writing to you under the Freedom of Information Act to ask the following questions.
1) Whose decision was it to reverse the safety policy on excluding gay men from donating blood to now allow men who have sex with men to donate?
2) Why was this done without any representation from the haemophilia community where the serious failures in delaying excluding gay men led to some haemophiliacs being directly infected with HIV and hepatitis viruses.
3) What improved safety measures are government now considering regarding blood donation policy with the arrival of new cases of monkeypox in men who have sex with men?
(Name and address supplied)
It now appears that monkeypox may have been circulating in the UK longer than realized and the incubation period is uncertain. Clearly haemophiliacs are once again concerned having been traumatised over and over again, infected with multiple deadly viruses and then exposed to variant CJD (Creutzfeldt-Jakob disease).
Colette Wintle a female haemophiliac wrote to her legal team representing her at the Infected Blood Inquiry and to Kate Talks (Haemophilia Society),
Latest reporting on the spread of monkey pox virus and the desperate attempt to disassociate it from the gay/bisexual community to avoid stigmatising them I fear will cause the DOH and other organisations to ignore the bigger picture of risks to the blood supply and once again ignore the rights of vulnerable patient groups like haemophiliacs to be protected.
This has nothing to do with homophobia but it’s a huge and legitimate concern that our safety will be compromised as it was with HIV and hepatitis .during the 70’s 80’s and 90’s.
The reality is that it clearly is being spread by gay / bisexual communities . How do we approach organisations like THT to encourage them to advise the people they represent to avoid donating their blood without becoming a target ourselves of attack? Other than contacting SABTO and the UKHCDO should we try and get a meeting with the Secretary of State for Health? Any thoughts on that? It’s really concerning that nothing has been written so far about advising people who are high risk of being infected to desist from being a blood donor. I am really worried about this situation.
Unfortunately the government has not helped relationships between haemophiliacs and the Terrence Higgins Trust that represent msm by once again employing “divide and conquer” tactics. THT is a British charity that campaigns about and provides services relating to HIV and sexual health. Haemophiliacs were infected with HIV through their plasma treatment. The reversal on the msm donor ban by government bodies was indeed timely given that the Infected Blood Inquiry is now underway looking at historical infection and past collection of plasma from HIV and hepatitis infected gay donors. Is the government once again attempting to whitewash the “haemophilia holocaust” and draw attention away from the highest risk practices of the 1970s and 80s involving gay donors? The exclusion of the Haemophilia Society and campaigners in the debate ensured there was no honest conversation with haemophiliacs and their families and ensured there was less opposition over reversing the ban on gay donors. Given their horrendous history of infection it is only natural haemophiliacs worry continuously over blood safety.
To add insult to injury, in an act of incredible insensitivity, in recent years, that the government scrapped the Macfarlane Trust set up to provide financial support to HIV infected haemophiliacs and affected families following litigation against the government in 1991 and transferred the remaining funds over to the Terrence Higgins Trust. Although there are gay men in the Haemophilia community, the issues of haemophiliacs are very different to those of msm. Haemophiliac’s issues are focused on historical injustice, alleged negligence, experimentation, treatment with factor concentrates in families where several family members may be infected with multiple viruses and prion exposure (CJD). The haemophilia experience of iatrogenic infection is very different to that of many non haemophiliacs with HIV hence the setting up of the Infected Blood Inquiry. However the pain and suffering of all infected with deadly viruses is recognized by this author and the best treatment and support must be provided for all.
It is important to note that the 1991 haemophilia HIV litigation was kept out of court, no compensation was ever paid but ex-gratia lump sum payments were made to infected haemophiliacs and some infected partners to assist financial need and monthly payments were provided via the Macfarlane Trust including to widows and for children. The trust also set up support week-ends and educational days for families. Years later the Skipton Fund was set up for those infected with hepatitis C and affected families.
However the government made a decision to scrap the trusts despite this author being assured in a Macfarlane Trust meeting of the Joint Partnership Group that the Trust and the monthly payments would remain until the last infected and affected beneficiary died. Suddenly a proposal was put forward to scrap 5 trusts including the Macfarlane Trust and Skipton and amalgamate them under the newly formed English Infected Blood Support Scheme (EIBSS) and its equivalent in the devolved nations. A meeting was held with a government appointed mediator to discuss proposals with haemophiliacs and their families but deliberately excluded long term campaigners so they could not raise objections.
Solicitors that had represented haemophiliacs in the HIV litigation were not informed and only learnt of the changes through their old clients afterwards who were denied the opportunity to seek advice on any legal implications. Some long standing campaigners only found out about the meeting after it took place, nor did they receive questionnaires to complete until it was too late. This author alleges the move to get rid of the Macfarlane Trust was allegedly undemocratic, unethical and possibly illegal. Government lied in public about all Trust beneficiaries/campaigners being consulted. Some haemophiliacs have refused to sign a consent form regarding the transfer of their papers to the Terrence Higgins Trust in protest.
Campaigners accuse the government of “pinkwashing” using THT when haemophiliacs have been extremely outspoken over 4 decades of campaigning on blood safety and issues affecting their community. They do not need THT speaking for them and if the same had been done to THT it is likely they would have been objecting strongly to haemophiliacs taking over THT and claiming to represent msm.
Pinkwashing is a tactic often employed by Apartheid Israel (with whom the British government under Boris Johnson and Keir Starmer, opposition leader are very close).
Pinkwashing is an Israeli government propaganda strategy that cynically exploits LGBTQIA+ rights to project a progressive image while concealing Israel’s occupation and apartheid policies oppressing Palestinians.
SAY NO TO PINKWASHING
Pinkwashing is being used here to divide haemophiliacs and distract away from their voices, giving financial control of Macfarlane monies to the Terrence Higgins Trust instead of the Haemophilia Society. As haemophiliacs await the forthcoming report from Sir Robert Francis on a compensation framework for those infected and affected, the voices of long standing haemophilia campaigners are being watered down on what they actually want. They do not need THT speaking for them or determining the agenda. Government must address those infected and affected through contaminated blood directly. Haemophilia representation comes through joint working with their legal representatives and the National Haemophilia Society not THT or the APPG for Haemophilia and Contaminated Blood that sat on key evidence and awarded research for years, damage limitation for government?
THT recently announced that on the agenda of the next Macfarlane Conversation would be the following,
- As part of Terrence Higgins 40th Anniversary, how we mark 40 years since HIV and haemophilia was first linked?
Is this a deliberate ploy to cause further distress to the Haemophilia community who were often infected through the blood of gay men as highlighted in US legal depositions and then had their HIV Macfarlane Trust allegedly illegally scrapped and passed over to THT. That will be quite some conversation!
This author does however recognize the positive work carried out by THT in some non haemophilia areas and indeed provided a quote in support of stopping cuts to services in parts of London, highlighting THT as follows,
“Community HIV services provide invaluable support and are a lifeline to those living with HIV that still suffer prejudice and discrimination. Cuts to these services at grassroots level is false economy as it means vulnerable persons will be missed or picked up much later and that could incur greater costs to hospital services. It makes no sense to remove key funding when HIV rates are above the national average in Lambeth, Southwark and Lewisham. Charities such as the Terrence Higgins Trust with decades of experience provide essential practical support and give guidance on benefits and housing as well as being there for the increasing numbers now struggling in poverty. THT also offer important counselling services. Having good support helps people to feel valued and to maintain independence in day to day living. Withdrawing funding is a very backward and unwelcome move and will cause unnecessary suffering to those infected.”
So far however most former Macfarlane Trust beneficiaries have not seen a penny from THT that appear inflexible on grants wanting only to give funding for counselling with requests regarding other needs turned down. It is surely time for THT to butt out of haemophilia campaigning and politics and stop using haemophiliacs as a means to attract additional funding.
This author has submitted the following previously unanswered questions regarding the scrapping of the Macfarlane Trust and transfer of funds to THT to the Department of Health, dated 30th May, 2022,
1) Under Freedom of Information please provide any documents discussing, or relating to the transfer of the Macfarlane Trust funds to the Terrence Higgins Trust (THT)
2) What was the reason THT were chosen as they are a sexual health charity with a history of specialising in the support of men who have sex with men? (Especially given the fact that many haemophiliacs were infected with HIV and HCV and died following the delays in excluding gay men from the plasma pools as highlighted in litigation testimonies.)
3) Why weren’t funds transferred to the Haemophilia Society that understand the needs of haemophiliacs with HIV/HCV and have a history of grant making to haemophiliacs?
4) Why did the government give false statements saying all haemophiliacs were included in the consultation to scrap the Macfarlane Trust and Skipton Fund when long standing campaigners of 30 years that had sat on the Joint Partnership Group of the Macfarlane Trust were deliberately excluded from the meeting with a government mediator to discuss their views?
5) Why were some campaigners not sent questionnaires until it was too late for them to submit their views.
6) Why was the process of consultation regarding scrapping the trusts both undemocratic and discriminatory?
7) Who made the decision to transfer Macfarlane Trust monies to the Terrence Higgins Trust?
To return to monkeypox and blood safety… how has government response varied in relation to men who have sex with men and haemophiliacs? Within the last 3 weeks as monkeypox has emerged, there has been a quick response from government to advise msm on prevention and what to do if infected. On June 2nd, Reuters highlighted,
According to the UKHSA, the majority of cases in the United Kingdom – 132 – are in London, while 111 cases are known to be in gay, bisexual, or other men who have sex with men (GBMSM). Only two cases are in women.
Recent foreign travel to a number of different countries in Europe within 21 days of symptom onset has been reported by 34 confirmed cases, or about 18% of the 190 cases of the disease that have been confirmed by the United Kingdom as of May 31.
So far, the UKHSA has identified links to gay bars, saunas and the use of dating apps in Britain and abroad.
“Investigations continue but currently no single factor or exposure that links the cases has been identified,” the agency cautioned.
Monkeypox can affect anyone, but many of the most recent diagnoses are the GBMSM community – many of whom live in, or have links to London, said Kevin Fenton, London’s regional director for public health.
There has not been one single statement from government so far to reassure the haemophilia community regarding current blood safety and no attempt whatsoever to engage with campaigners to try to allay any fears. Once again haemophiliacs are a forgotten community put on the backburner. It is unlikely government will want to draw further attention to past blood safety violations with the contaminated blood compensation framework proposals about to be released and with the recent changes to allow msm to donate (deemed controversial by some). If past experience is anything to go by, government will continue to be focused on denying culpability, minimizing payments to the those infected and affected and reneging on commitments given to provide “substantial compensation”. Nor will government want today’s blood safety guidelines placed under direct scrutiny in relation to monkeypox and msm just in case once again they have failed us!
Carol Anne Grayson is an independent writer/researcher on global health/human rights/WOT and is Executive Producer of the Oscar nominated, Incident in New Baghdad. She was a Registered Mental Nurse with a Masters in Gender Culture and Development. Carol was awarded the ESRC, Michael Young Prize for Research 2009, and the COTT ‘Action = Life’ Human Rights A