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Access to Medicines Ireland is committed to ensuring much needed medicines are available to patients at a fair price, writes Ciara Conlon
In June 2019 the INMO affiliated to Access to Medicines Ireland (AMI), a Comhlámh member group comprising medical professionals, activists and con- cerned members of the public. The group is committed to ensuring that medicines are made accessible at a fair price and that medical research and innovation is directed at the areas of greatest need. Nurses and midwives are at the forefront of care for patients who are frustrated by the inability to access medicines due to cost. This lack of access can have a significant impact on their quality and length of life. As healthcare professionals, we want to do all we can to alleviate suffering and to offer the best possible care to our patients. When, for any reason, we can’t provide that high standard of care it can lead to disillusionment and frustration on our part and to unnecessary suffering and even death on the part of our patients. This deficit in care is evident when new medicines are brought to market but are unavailable to patients due to cost. Recent examples include delayed access for patients in Ireland to medicines for cancer (Kadycla), cystic fibrosis (Orkambi) and Hepatitis C (Sovaldi). 1 The prices charged for medicines have a long history of affecting patient care. In the late 1980s, medicines were devel- oped using university research funded by the public that transformed HIV from a death sentence to a manageable chronic illness. There was a catch – you had to be wealthy enough to afford the treatment. The manufacturers insisted on a price tag of $12,500 per annum in African countries, even though generic manufacturers offered to produce and market antiretroviral (ARV) drugs for $350 per annum. 2 Millions of people died in the early 1990s because they were unable to access treat- ment at the price set by manufacturers.
“At Médecins Sans Frontières, we see the impact of high price medication for hepatitis C. Since we secured deals for generic hepatitis C treatment for as low as $1.40 per day, we have been able to treat people with hepatitis C in 11 countries. The overall cure rate is excellent. We see our patients feeling so much better and living happier lives and we strive to continue the fight to secure treatments at low costs for all people with hepatitis C. Getting a call recently from a member of the public in Cambodia who couldn’t access treatment was difficult knowing that our patients in India have access.” – Beverly Stringer, paediatric nurse practitioner, anthropologist and health policy and practice programmes advisor with Médecins Sans Frontières “I am a PHN in the community for just over a year now and I am unable to offer home help or homecare packages to people as I am repeatedly told by my manager that there is no funding. As a result of not meeting the care needs of older adults, they are presenting to the ED, admitted, discharged and the cycle of failed discharges occurs. Where is all the money being spent? The gross inadequacy of our government to run a health service budget affects our medication bill every year. It’s a disgrace Ireland’s sickest people can be faced with the added stress of unaffordable medications. It is so wrong.” – Carol Bergin, PHN
Treatment activists took a stand and pressure was heaped on pharmaceutical companies and governments by university students, patients and their nurses and doctors, and organisations like Médecins Sans Frontières. These activists did not rest until generic production was allowed, which lowered the price to less than a dollar a day. ARVs were soon in widespread Today, the struggle for access to afforda- ble medicines affects not only developing countries but also wealthier countries like Ireland. There are many examples of drugs that are priced out of the HSE’s range. 3 The pharmaceutical industry states that such high prices are necessary to pay for research and development (R&D). However, aWorld Health Organization (WHO) report in Janu- ary 2019 stated that “the costs of R&D and production may bear little or no relation- ship to how pharmaceutical companies set prices of cancer medicines. To add insult to injury, over one-third of medicines’ R&D is funded through the public purse which sur- prisingly offers no advantage in terms of subsequent price control”. 4 The real explanation for the high price use across the world. 2 Priced out of range
of medicines is that the reward for suc- cessful research is a patent that grants the holder exclusive marketing rights for a period of 20 years. During this period pharmaceutical companies can set the price as high as they please. 2 A further contributor to high prices is the enormous sums spent on advertising and promotion that amount to almost twice that spent on R&D. Finally, there are the large profits paid to shareholders that help to make the pharmaceutical industry one of the most profitable in the world. 5 In Ireland today, patients are often forced into exerting public pressure with emotionally resonant messages in a lot- tery for treatment. Families often resort to crowdfunding in order to raise money for much needed medicines. Another problem with the profit-driven research model is there is little incentive to develop drugs that have limited profit potential. Therefore there is a paucity in research for desperately needed antibi- otics and medicines for diseases such as tuberculosis or ebola, which predominantly affect people in poorer countries. With few vaccines or treatments available for emerg- ing infections like ebola or the zika virus,
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