HIV-Sweden in the media - new article on HIV and preparedness in Altinget
Hiv-Sweden's article "If war comes, do we have a plan for HIV?" was published on April 15 in Altinget. The article can be read on Altinget.se here. The authors of the article are Emanuel Karlström, strategist at Hiv-Sverige and Erik Malmstig, freelance journalist.
If war comes, do we have a plan for HIV?
"How can Sweden manage HIV care during a major crisis, how can we manage access to medicines during a trade blockade, and how can a disinformation campaign about HIV be handled? Erik Malmstig, freelance writer and Emanuel Karlström, strategist Hiv-Sverige.
In 1962, Herman Kahn wrote "Thinking about the unthinkable doesn't necessarily mean thinking about the unlikely."
Kahn puts his finger on how unthinkable future scenarios mean neither low nor unlikely chance of occurrence.
"A telling example is that last year the government cut back on HIV work in favor of supporting public sporting events."
In today's uncertain world, with wars in our neighborhood, the tightening of global aid, and global trade wars, the likelihood that rational plans cannot be implemented as we intended increases. So we must dare to imagine what we hope never happens. And plan for it.
In 2024, Sweden became the first country in the world to achieve UNAIDS' ambitious targets for HIV testing and treatment. The flip side of this success story is that HIV risks being seen as a challenge society has already solved. This is what is known as the curse of good prevention: when a treatment is successful, people forget how bad things once were. There is then a risk that the focus will shift to other areas, as is now likely to happen with HIV in Sweden.
A telling example is that last year the government cut back on HIV work in favor of supporting public sporting events.
How would HIV care fare in war or crisis?
In our report we highlight lessons learned from Ukraine, which today has the largest spread of HIV in Europe. War is such an existential threat that people living with HIV risk forgetting to take their medication or being forced to flee their homes without it. In addition, it appears that the stigma surrounding HIV has an even greater impact in war than in peacetime. This affects willingness to get tested, especially among young people.
How would HIV care fare if Sweden were at war? As far as we can see, this question has never been tested, and no preparedness exercises involving HIV have ever been carried out. Who takes responsibility for ensuring that HIV is seriously on the table when preparedness is discussed and planned for?
We also see other threats. Research shows that times of crisis like today provide good conditions for spreading disinformation. At the same time, the LVU campaign has shown how vulnerable our country is to influence operations. What if the next target is people living with HIV? What narrative would then be spun?
Is HIV taken seriously in preparedness work?
It is likely that inspiration would be drawn from myths already spread in the Western world. Myths that have been spread in one of the most listened to podcasts in Sweden: The Joe Rogan Experience. A regular guest on the podcast is Professor Peter Duesberg, who has argued since the 1980s that HIV does not cause AIDS. Instead, Duesberg believes that AIDS is caused by drug abuse and promiscuity. Antiviral drugs should be completely avoided. How does this affect young people's views on HIV today?
At the same time, the shortage of medicines in Sweden is greater than it has been for a long time. As HIV drugs are mainly manufactured by two companies, Gilead Sciences and ViiV Healthcare, this makes supply particularly vulnerable to disruption. How can we secure the supply of antivirals when US drug research is under threat and we are facing a global trade war?
Our report does not provide all the answers. Rather, it shows that the questions need to be asked. We must dare to think the unthinkable to prevent it from happening. What is the government and responsible authorities doing to ensure that HIV is taken seriously in preparedness work?"
Roundtable with the Ministry of Social Affairs on HIV work in Sweden
On Tuesday 11 February, HIV-Sweden and other organizations met with State Secretary Petra Noreback at the Ministry of Social Affairs to discuss the work on HIV in Sweden. The meeting was initiated by State Secretary Noreback and came about after HIV-Sweden, together with other organizations, had for some time requested the attention of the Ministry of Social Affairs. The aim of the meeting was to discuss success factors, opportunities and challenges in the work with HIV/STIs in Sweden in the light of the achievement of the so-called 95-95-95 targets in 2023.
Among other things, HIV-Sweden emphasized the importance of not settling for the hope that the work with HIV is over and that continued efforts are needed. One example is the UK, which has shown a downward trend in new HIV diagnoses for 15 years. Five years ago, the trend was reversed and the number of newly diagnosed cases began to increase. The Starmer government has therefore announced that it will invest SEK 365 million in HIV work, starting in 2025. During the meeting, Hiv-Sverige also raised the fact that the group of people living with HIV has never been larger in Sweden and that we still do not have a single person who has lived a full life with HIV and antiretroviral treatment. We also emphasized that people living with HIV are affected earlier and to a greater extent by co-morbidity. Efforts are needed to improve and prepare care at both regional and municipal levels. Hiv-Sverige, together with several other organizations, also stressed the importance of continuing to work to increase knowledge about HIV in society and counteract the stigma that affects people living with HIV. For many, being diagnosed with a chronic disease that is fatal without treatment is a significant personal transition, which requires society to offer support to create the best conditions for a good life with HIV.
All in all, there are several challenges and needs in the area of prevention as well as in the work on HIV stigma and increasing the quality of life for people living with HIV. One signal that Sweden is once again taking a leading role in the work on HIV is that Sweden is also focusing on achieving the so-called fourth 95 target: that 95% of people living with HIV in Sweden should have a good quality of life.
Hiv-Sweden's proposal to the Ministry of Social Affairs
In connection with the meeting, HIV-Sweden submitted the following proposal to the Ministry of Social Affairs.
Conduct a risk analysis of the consequences of a cut in HIV funding
Taking into account the complexity and dynamics of HIV analysis
Give the National Board of Health and Welfare the task of developing national guidelines for the care of people living with HIV to create equal care throughout the country
Ensure that the appropriation and regulations are fit for purpose, in order to maintain Sweden's 95-95-95 status in the future and be able to work on a fourth goal; that 95 percent of people living with HIV in Sweden should have a good quality of life
In light of the instability and uncertainty in our neighborhood, and the announcement by the new US administration to end or severely restrict PEPFAR and USAID funding, which provides HIV medicines to approximately 20 million people living with HIV, HIV Sweden also presented the report "On HIV in times of crisis or war", which highlights HIV from a Swedish preparedness perspective, focusing on drug supply and disinformation. The report can be read or downloaded here.
HIV-Sweden also submitted the report "HIV in a new era", which sheds light on HIV and living with HIV from a health economic perspective.
Nominate for the board of Hiv-Sweden 2025.
Are you a curious person and want to be part of a wonderful community to create a better society on issues that affect people living with HIV?
Then it's time to nominate you or someone you know for the board of Hiv-Sweden. Members are elected for two years and deputies are elected for one year.
The Nomination Committee is looking for you who:
- Live with HIV, but also you with a family perspective.
- You may have previous experience of board work.
- Good knowledge of economics.
- Have an interest in developing your knowledge of HIV and organizational development.
Submit your nomination by filling in the form below.
Yours sincerely,
Hiv-Sverige Nomination Committee
Important win! Health care exempted from reporting obligations
On November 26, the report on strengthening return operations was presented. Among other things, the report looked at whether and, if so, how authorities and public officials should report people who are in Sweden illegally.
Hiv-Sverige wrote already in the summer of 2023 that the proposal risks damaging the work with HIV/AIDS in Sweden, and that a duty to report would lead to increased vulnerability and social exclusion with poorer infection control as a result. https://www.hiv-sverige.se/.../opinon-angiveriskyldighet... Over the past year, we have also collaborated with other actors and courted decision-makers in the Government Offices and at events such as Almedalen to draw attention to the risks of the proposal.
The committee's proposal now exempts healthcare from the duty to report, and the government and the cooperation parties announced during today's press conference that they also support the committee's proposal. The reasons for exempting health care from the obligation to report are stated to be, among other things, people's right to receive care that cannot be postponed and a potential deterioration in the protection against infectious diseases.
HIV Sweden will continue to monitor the issue to ensure public health and that the rights of people living with HIV are strengthened.
Here is an interview we conducted with Sineva Ribeiro, President of the Swedish Medical Association, during Almedalen 2024.
Government cuts funding for HIV/AIDS and other communicable diseases in 2025 budget by €23 million
Eva Lilja, President of Hiv-Sverige
- With reduced funding, there is a risk that fewer people will be reached by initiatives that help to strengthen people's health and public health in general," says Eva Lilja, Chair of Hiv-Sverige.
The announcement to reduce the budget comes just a short time after a new strategy against HIV/AIDS and certain other sexually transmitted diseases was announced. On August 1, 2024, the first day of Stockholm Pride, Minister of Social Affairs Jakob Forssmed (KD) announced that Sweden has a new strategy against HIV/AIDS and certain other sexually transmitted diseases. In a post on the Ministry of Social Affairs' LinkedIn page, Forssmed announced that:
- The work for good and equal health in the population is crucial in a welfare society and it is important that prevention efforts reach both priority groups and the entire population. People with HIV in Sweden should have the same opportunities for good health and a good quality of life as the general population.
In a press release from the government, Johan Hultberg, social policy spokesperson for the Conservatives, also made a statement:
- Today, HIV is a chronic infection that is not contagious when treated. Despite this, HIV is unfortunately still strongly stigmatized. Efforts to raise awareness and break the stigma therefore need to be intensified.
A reduction in funding is inconsistent with both achieving the level of ambition in the strategy and intensifying efforts to spread knowledge and break stigma.
- We have an increased prevalence of STIs in several groups, more people living with HIV and several groups that do not have equal access to care and interventions. Civil society is pulling a heavy load and we have for several years maintained our responsibility for people's health and well-being," says Eva Lilja, Chair of Hiv-Sverige.
Hiv-Sverige is looking for the minister responsible.