Under increasing pressure from Vertex Save Us, the Right to Breathe campaign, our supporters and allies, Vertex has been forced to take steps to provide access to Trikafta in some low and lower-middle income countries (LMICs). We have been demanding that Vertex drop their patents in LMICs and issue ‘voluntary licences’ which will enable other drug manufacturers to make cheaper generic versions of their drugs to be distributed within that country. This has been done successfully by other pharmaceutical companies and is a proven, secure and sustainable solution that does not rely on the fragile goodwill of a drug company. However, Vertex have decided against this approach and instead have announced that they will be piloting a ‘donation programme’ in 12 countries, where they will provide Trikafta at no cost. But there is very little transparency around how and when the programme will be implemented. These countries are listed here along with the estimated diagnosed CF populations for each country in brackets, according to recent scientific research. Vertex’s ‘donation programme’ countries:
Ivory Coast (No data available)
Kenya (No data available)
Tanzania (No data available)
Uganda (No data available)
Nepal (1)
Sri Lanka (10)
Honduras (20)
El Salvador (27)
Lebanon (50)
Tunisia (67)
Ukraine (408)
Egypt (800)
As can be seen, there is no data available for 4 of these 12 countries and another 5 countries have only between 1 and 50 diagnosed CF patients. Where there is no data available, there are no registries and no routine diagnostic testing. It is safe to assume that there are very small numbers of diagnosed CF patients in these countries or none at all. In contrast, no upper-middle income countries (where there are thousands of diagnosed CF patients) have been included in the programme.
In addition to these countries, Vertex has recently stated that they will also be expanding the programme to CF patients in India and Pakistan but we have no further details on how or when this will happen.
Senior Vertex representatives have tried to assure us that this is an appropriate and effective method of providing access for CF patients in lower-income countries - we disagree. A donation programme has never been used to overcome widespread access issues. Also, there is no plausible reason for selecting countries with very few or no diagnosed CF patients unless the intention is to mislead the CF community and the world into believing that Vertex are trying to provide access to patients in lower income countries whilst actually doing very little. Advice for CF patients living in ‘donation programme’ countries:
Of course, we are extremely happy for CF patients in Egypt, Ukraine, Tunisia, Lebanon and other donation programme countries that can access Trikafta this way, and we encourage you to speak to your CF doctor as soon as possible. A Vertex representative has indicated that treating doctors in ‘donation programme’ countries should contact Vertex’s global medical information line:
Latin America:
Tel: +55-11-4700-2942
Email: medicalinfoLATAM@vrtx.com
Africa, Asia & Europe:
Tel: +353 (0)1 761 7299
Email: vertexmedicalinfo@vrtx.com
Vertex advisors will either connect the doctor to Direct Relief (a US charity that is helping to deliver the donation programme) or to other doctors that are involved with implementing the process in that country. Please do keep us informed if you live in one of these countries and are having problems accessing Trikafta through the donation programme.
At this point, we are deeply concerned about the lack of transparency around the programme and have repeatedly asked Vertex for further details in writing but they have been unwilling - or unable - to provide this information. We will be sending an open letter to Reshma Kewalramani, CEO of Vertex, again asking for answers to a number of key questions and concerns.
Finally… we are fully aware that this donation programme will not address the issues with access to Trikafta for the vast majority of CF patients living in low and middle-income countries and we will continue to demand that Vertex lowers their prices, drops their patents and issues voluntary licences to allow access for all.
We will continue to keep the CF community and our supporters informed of any developments.