Buyers’ clubs have played an important role in solving access to medicine challenges in many countries around the world over many years. The Hollywood film, Dallas Buyers Club, was a fictionalised account of the buyers clubs which sprung up in the 80s and 90s in response to the lack of access to HIV treatment. 

In recent years, buyers clubs have been created in response to the lack of access to medicines due to excessive pricing or monopoly exploitation from patent holders. The high prices of many patented medicines have resulted in lack of access in many countries. In the UK the NHS rationed access to the transformative, curative hepatitis C medicine, sofosbuvir due to the high price. It also fought a court battle to avoid responsibility for providing access to the HIV preventative medicine, PrEP, due to the anticipated cost. In both cases quality-assured generic versions of the drug were available in other countries for a small fraction of the price of the patented medicine.

Buyers’ clubs enable patients to understand their right to procure these more affordable versions of the drug, providing information that allows them to buy the medicine they need. In some cases they help patients to club together and secure a discounted price.

Many hundreds of UK patients have been cured of hepatitis C using generic versions of sofosbuvir bought through online buyer’s clubs, and every week thousands of UK citizens took generic PrEP to protect themselves from HIV using pills bought through buyers clubs, until routine NHS funding.

CF families travelled to Argentina to buy CFTR modulators that helped to treat their condition, before NHS funding of the branded products came into force in the UK in November 2019. Watch our story on BBC Newsnight here.

Since then CF patients from countries across the world have used this mechanism to access lifesaving generic treatment. But the price was still prohibitively high for most patients and families.

For many months we have been in conversation with Bangladeshi drug manufacturer Beximco who have begun producing generic versions of ETI (elexacaftor/tezacaftor/ivacaftor). We are working with them to secure a stable supply of medicines to people with Cystic Fibrosis around the world. They have committed to humanitarian pricing that will make access possible for thousands more CF patients.

The Buyers’ Club aims to provide patents, families, clinicians, and health system workers with the information they need to make informed decisions about the legal options that exist to enable them to access generic modulators. 

To hear about the next steps in the development of Triko and how patients can get access to it, watch the recording of our briefing call.

It is important to understand that you will not purchase the medicines from the CF Buyers Club. You will purchase directly from the generic manufacturer or their designated pharmacy. We do not offer medical or legal advice - it is the responsibility of anyone considering acting on the information made available to them by the CF Buyers’ Club to seek appropriate medical and legal guidance.

For more information please email: info@cfbuyersclub.org