An informal advocacy alliance that shares a commitment to raising awareness of tuberculosis and to increasing the political will to control the disease through the WHO Europe Region and worldwide.
TB EUROPE COALITION NEWSFLASH
23/09/2014
The TBEC newsletter brings you news items, information about upcoming events and stories from the region every month. We hope that you will find this newsletter interesting, and we hope that it will inspire you to share stories from your own work.
To become a member of the TB Europe Coalition or to share your work, please email Fanny Voitzwinkler at fvoitzwinkler@ghadvocates.org.
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TBEC participates in the WHO National TB Programme Review for Armenia
Oxana Rucsineanu, a member of the TB Europe Coalition Steering Committee, recently took part in the WHO NTP Review in Armenia. Oxana’s participation follows calls from civil society organisations towards the WHO to include a civil society or key affected voice in NTP reviews.
The findings in Armenia were promising for several reasons. Firstly, a TB patient group, led by an MDR-TB survivor, has recently been formed. Additionally, other TB survivors have started to be involved in peer-to-peer education. There is also a focal person for ACSM activities within the National TB Programme. This focal point has conducted face-to-face counselling sessions for regular TB patients and trainings in ACSM for medical staff.
There are several NGOs active in TB in Armenia. These organisations have been using tools to address TB such as psycho-social assistance, information provision, education and counselling activities. The work of on NGO, MSF, has meant that the drug Bedaquiline is available for M/XDR-TB patients through a compassionate use programme. Thanks to support from the Global Fund, other NGOs have been able to provide social support to TB patients and deliver treatment to over 100 patients with mobility difficulties.
Currently, the WHO team and the Armenia NTP Control Centre are working on a set of recommendations for the ACSM and Community Involvement Component of the Review. In the meantime, you can click here for more information.
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TBEC signs open letter to Janssen seeking to lower price of new TB drug for all non-high income countries
TBEC was pleased to be able to sign an open letter to Janssen this month that appeals to the company to lower the price of bed aquiline for all non-high income countries.
Bedaquiline (Sirturo) is the first new TB drug from a new drug class to receive approval in over 40 years and is critically important for people with drug-resistant TB with limited treatment options. Yet bedaquiline is not accessible to the patients and TB programs who need it. Once registration barriers are overcome, Janssen’s prohibitive pricing and patenting of the drug will become the major barrier to access.
The letter, initiated by a US-based Treatment Action Group, and now signed by TBEC, notes that “failure to institute significant price reductions or to successfully negotiate voluntary licenses could lead countries to consider using compulsory licensing in the future to ensure access to bedaquiline, should the drug’s positive impact be more definitively demonstrated. More importantly, failure to introduce or stimulate further price reductions for bedaquiline may well lead to avoidable suffering and death.”
The letter calls on Janssen to remove the middle pricing tier, thereby allowing all non-high-income countries to access a lower price and avoid individual negotiations.
On March 6, 2014, it was announced that the European Commission has granted conditional approval to SIRTURO (bedaquiline) in the EU, for use as part of an appropriate combination regimen for pulmonary MDR-TB in adult patients, when an effective treatment regimen cannot otherwise be composed for reasons of resistance or tolerability. The drug also has received accelerated approval in the US and has been registered in the Russian Federation by JSC Pharmstandard.
In relation to the EECA region that has large drug-resistant TB burdens, the letter specifically calls on Janssen “to ensure that the policy of removing the middle pricing tier is also made available in the regions where the license to bedaquiline has already been granted to other distributors, for example in Russia and the FSU states”. You can read more here.
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Confusion over GF terminology may hamper domestic resource mobilisation
In a recently published article on AIDSPAN website David Garmaise addresses the issue of the new terminology used by the Global Fund.
In letters sent to countries informing them of their 2014-2017 allocations under the New Funding Model some components are identified as "over-allocated". The “over-allocated” label did not mean that the component was receiving more money than was needed to fight the disease. It was simply a term used by the Global Fund to describe a component whose final allocation exceeded the amount than the NFM formula initially said it should receive.
But, the author says, the “over-allocated” label is being misunderstood in ways that could be harmful to the Global Fund and to people affected by HIV, TB and malaria. According to the article, some government officials have said that if a component is considered “over-allocated,” it must be getting more than enough money and so there is no need to look for more domestic resources.
In July 2014, the GF published a New Funding Model Progress Update, which acknowledged that the allocation letters “have had unintended consequences on domestic resource mobilization efforts.” The progress report emphasised that no country is receiving enough money to fight the three diseases, including countries with components designated as “over-allocated” by the new Global Fund’s allocation methodology.
However, that message is obviously not getting through. It isn’t getting through because the Global Fund is not doing a good enough job of explaining the terminology it uses and because it has failed to make public many details on how the allocation methodology is being applied. In the absence of information, people tend to jump to erroneous conclusions.The full article can be read here:
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