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Patient pressure Swiss deal on cystic fibrosis drugs could change price negotiations

young girl

The deal is expected to help 400 eligible cystic fibrosis patients in Switzerland.

(AFP)

A long-awaited deal between Swiss public health authorities and US drugmaker Vertex brings relief to cystic fibrosis sufferers in Switzerland. It may also pave the way for faster approval and fairer drug pricing.

“We have been waiting almost four years for this. It is very positive news for patients in Switzerland,” says Romain Benicchio, whose eight-year-old son has cystic fibrosis.

It’s a genetic, potentially life-threatening disease that causes severe damage to the lungs and digestive system. Last year was a particularly difficult year for his son who spent an entire month in the hospital with infections. People with cystic fibrosis are also at greater risk of serious illness from Covid-19.

Based on the deal announced on Tuesday, the drugs Orkambi, Symdeco und Kalydeco will be on the Swiss drug specialties list as of May 1, which means they will be reimbursed uniformly by health insurance. This comes as a big relief to cystic fibrosis sufferers.

But for Benicchio, who has worked in public health advocacy, it’s not the end of the fight for fair drug prices.

“I worry that what patients have had to go through with Vertex will just happen again and again with other diseases,” he says, pointing out that pharmaceutical companies are making the most of their position to charge as much money as possible for their life-saving treatments.

“This is a caricature of a broken system.”

Playing hardball

One of the most promising of the three drugs in the cystic fibrosis deal, Orkambi, was approved by the Swiss drug oversight body Swissmedic four years ago. However, drugmaker Vertex and the Swiss public health authorities had been unable to agree on a price for the treatment. Orkambi was only available in Switzerland in exceptional cases because it didn’t meet the Swiss health office’s economic efficiency criteria for drugs.

The situation left patients in limbo in Switzerland, one of the few remaining countries where the medicine was not available to a wider group of patients.

Without Orkambi, Benicchio’s son relies on nebulisers, pancreatic enzymes, and treatments that address cystic fibrosis symptoms but not the underlying causes. By contrast, Orkambi affects the progression of the disease by targeting lung function, which means less time in the hospital and fewer antibiotics used against infections.

The maker of the drug, US company Vertex, launched the therapy several years ago and has faced mounting pressure in several countriesexternal link for insisting on the high price, which is estimated at CHF160,000 ($164,000) per patient per year and isn’t a cure. One study estimated that Vertex will make $21.1 billionexternal link in profit over the lifetime of Orkambi and an earlier drug called Kalydeco. 

Initial funding for research and development into the drug was funded by patient associations in the US but the patents are now in the hands of Vertex, which is the main producer of cystic fibrosis drugs. With its outsized share of the market, the company has been able to name its price, creating a firestorm among patients and families who say the company is holding them and health systems hostage.

In a statement, Ludovic Fenaux, senior vice president of Vertex International, said that “This agreement is an important milestone for the cystic fibrosis community in Switzerland. Access to Orkambi and Symdeko is especially important at this time given the COVID-19 outbreak and that people with CF are vulnerable to infections.”

The deal will make these drugs available to 400 eligible patients in Switzerland.

Pressure points

But Swiss health authorities and Vertex have still not disclosed the drug prices they agreed upon, keeping patients and health providers in the dark.

Patrick Durisch who leads health policy at the NGO Public Eye says this is a clear example of the imbalance between authorities and companies when it comes to negotiations on drug pricing and access.

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“It is no coincidence that nothing happened for years and then after parents, patients’ groups, and instruments like compulsory licensing started being thrown into the arena, a deal was struck,” he told swissinfo.ch. “This shows that a deal is achievable. Sometimes when negotiations are stuck, it takes some external pressure.”

One key pressure point has been a grassroots effort led by parents of children with cystic fibrosis in western Switzerland. They have started a buyers’ club, building on an example in the UKexternal link and used for other drugs like Hepatitis C. The clubs aim to import generic versions of the drugs from other countries where the drug isn’t patented.

It wasn’t a sustainable solution but a last resort for many parents, says Benicchio.

“It has been a terrible situation. especially when you have kid with the disease,” he says. “The medicine can help address the progression of disease. The damage to the lungs is permanent so every month without the medicine, you won't get back."

Setting a precedent

Reto Weibel, co-president of the Swiss Society for Cystic Fibrosis, agrees that the deal is a huge relief. More importantly, he says, it offers hope for future treatments for the disease, specifically Trikafta, also produced by Vertex. The treatment was approved and designated a breakthrough therapy by US authorities in October 2019.

Trikafta is a next-generation triple combination treatment that is expected to be life-transforming, particularly for young patients.

Vertex submitted the marketing authorisation application for the drug to Swissmedic on March 24, 2020 and Weibel is optimistic that the latest deal with Vertex could pave the way for a faster approval.

Swissmedic has already given the treatment fast-track status but Covid-19 has added urgency. Weibel’s association is asking authorities to speed up the approval period to improve a cystic fibrosis patient’s chances of surviving a possible Covid-19 infection. In the meantime, they are also calling on Vertex to distribute the drug free of charge to patients who can’t be treated with Orkambi or Symdeco.

“We have to change the system. When there is a new drug for an illness, patient organisations need to be involved. We can’t decide the price, but we can show how this drug will change our lives,” says Weibel.

 

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