How did Germany run low on potentially life-saving HIV medication?
Ryan, a 28-year-old who lives in Berlin, first realised his prescription of PrEP was running low when his doctor advised him to space out his dosage.
"I took steps to reduce the number of pills I take, four rather than seven on the advice of my physician. I also have two emergency bottles of PrEP that a friend gave me," he said.
Ryan says some of his friends were also changing doses of medication.
PrEP is a potentially life-saving medicine that offers protection against contracting human immunodeficiency virus (HIV) and consists of drugs used for treating those who have HIV as well.
According to the Robert Koch Institute, about 32,000 people in Germany take PrEP.
For those who rely heavily on PrEP, spacing out medication can be risky as it doesn’t provide the same level of protection.
Ryan says it was inspiring to see other people help each other by sharing medication, but also brought a certain amount of distrust towards a healthcare system that failed to safeguard against a months-long shortage.
Ignored warnings
Dagnae, an association of HIV specialists, say that around 90 per cent of Germany’s surgeries and pharmacies had been impacted by shortages of PrEP.
Shortages of the drug, which were announced as early as October by Dagnae, dragged on for months.
Deutsche Aidshilfe, an umbrella organisation that represents the interests of people living with HIV/AIDS, said that it announced in November that the country was facing serious supply problems, citing various pharmacies in Germany.
They say a pharmacy in Cologne was told by manufacturers of the drug that supplies wouldn’t be available until the end of January.
Despite the warning, Germany’s Health Ministry only declared that they were starting to work to relieve the shortage on January 25th, 2024. But shortages were still reported in some places as late as March.
According to Dagnae, the lack of PrEP during these months caused "devastating impacts on patient care" and led to uncertainty about prescription practices, drug risks and compliance with generic drug quotas.
Germany's Health Ministry did not immediately respond to a request for comment.
A medication bottleneck
Daniel Sander, a representative from Dagnae, told Euronews Health that a variety of factors likely contributed to the shortage of PrEP.
One possible reason was that the allowable threshold for CMIC, an impurity found in PrEP's active ingredient, was lowered in Europe last year according to guidelines published by the World Health Organization.
As a result, fewer suppliers were able to ship Emtricitabine and Tenofovir-based medicines to Europe.
In Germany’s case, the shortage may have been exacerbated by the way the healthcare system purchases drugs.
Sander says that when PrEP medication became available to patients covered by German state healthcare insurance, only the companies supplying the cheapest form of PrEP were able to have contracts with German healthcare insurers.
The consequence is that the market for PrEP in Germany had relatively few drugs. When the availability of those drugs suddenly decreased, it created a bottleneck in supply.
"The issue with PrEP is that if you can't supply this exact mix of tenofovir and emtricitabine that was covered by health insurance, there is no alternative," Sander said.
"Once we had the shortage you were helpless because we could tell people we didn't have it, and you can't take anything else unless they could pay for it themselves".
According to Sander, the fact that drugs are often produced outside of Europe also meant that it was difficult to find out what was unavailable and why.
'Must not happen again'
Ben, a 31-year-old who also lives in Germany and takes PrEP, said stocks of the medication returned to the shelves under a different brand, following the push from authorities in late January.
AIDS prevention organisations in Germany have highlighted that there should be a push to ensure the situation does not happen again.
"The fact that a vital HIV drug is no longer available for a long period of time must not happen again," said Sylvia Urban from the board of German Aidshilfe.
"Prevention has been damaged, many people have been unsettled and exposed to risks. Now politicians have to secure long-term supply and regain trust".
Sander added: "Luckily, we are now in a situation that is apparently going better. But I do not or I haven't yet seen any significant systemic changes that will ensure that this won't happen again. So all of us are still very, very, very cautious of how the situation will unfold in the future".
Dagnae has reported that the situation was the most acute in Germany, but other countries were not immune to the shortage with organisations in Sweden, Belgium, and Spain also claiming that some manufacturers were not delivering.
