MS Ireland Is Beginning A Campaign To Lobby for Better Access To Treatments
Disease modifying therapies are an important part of managing MS for many people. Avonex, Betaferon, Copaxone and Rebif are all first line therapies licensed and widely available. The HSE pays for these drugs through the High Tech Drugs scheme.
However, some are experiencing difficulties getting some of the second line therapies their neurologist recommends. These drugs are often given if the person has highly active MS or side effects from the other therapies are too severe.
Tysabri is a licensed second line therapy for MS and is currently given in the hospital by infusion. However, some hospitals are limiting the number of people able to get the treatment. Many hospitals say they can’t afford the drug because of budget cuts.
Gilenya is the first oral therapy for MS and received its licence in 2011. All new drugs need to undergo a Health Technology Assessment (HTA) to assess the cost of the drug versus the benefits. Under a national agreement the HSE has with the pharmaceutical industry, drugs that receive a positive HTA should be reimbursed within 40 days. This means that after 40 days the HSE would pay for the drug and neurologists should be able to prescribe to patients.
Gilenya received a positive HTA in September. Gilenya should have been available in November. It isn’t.
MS Ireland is really concerned that people with MS are being denied treatments. We have begun some work on trying to resolve the issue. We have written to the HSE and Minister for help asking them to resolve the situation immediately. We have met with the Irish Pharmaceutical Healthcare Association (IPHA), who form agreements with the HSE around drugs. And we have met with the relevant pharmaceutical companies.
We are now in the process of planning a public campaign which we are launching in early April. To start, we need your help:
Have you been denied treatment and would like to share your experience? Please become a spokesperson today?
Would you be willing to write or speak to your local TD? We are in the process of putting together information to help. Sign up to our newsletter for more details when we launch the campaign.
MS Ireland believes that people with MS should have assess to all appropriate and approved treatments and interventions, as recommended by their neurologist or doctor. Help us achieve that and support the campaign today.
Queries and comments to Taragh Donohoe, Communications Manager, firstname.lastname@example.org or (01) 678 1600