It wouldn’t be an exaggeration to say public health coverage in mainstream publications is fairly limited; which in turn results in little awareness of diseases that affect the most vulnerable and marginalized communities across the world. Noma, an infectious, non-contagious, bacterial disease that destroys the bone and tissue affecting the jaw, lips, cheeks, nose or eyes, is one such neglected disease.
Hafiz Muhammed, a plastic surgeon from Calicut, Kerala, just returned from his first assignment in Nigeria where he spent two weeks treating patients suffering from noma. This was his first time treating the disease; he had only read about it in medical school as a neglected disease once prevalent across the world before the industrial revolution. Historically, noma was reported throughout history in Asia, Europe, South America, and Africa. The disease was first reported by Hippocrates in the 5th century BC. In Europe, cases were also reported in concentration camps during World War II. Today noma is prevalent across the Sahara, from Senegal to Ethiopia, with few cases reported even in the United States and Europe in patients with poor immune systems. You can check out this infographic to know more about the disease.
Hafiz’s role as a surgeon placed him with the most difficult task; people who survive noma have only one choice if they want a better life: they must undergo extensive reconstructive surgery. He has much to share about his experience, so do get in touch with us if you wish to speak to him!
Patent barriers and access to medicines:
Away from the field, and yet in a way close to it, MSF continues to fight for access to essential medicines. Last week, MSF demanded to reduce the price of Tuberculosis (TB) drug bedaquiline to US$1 a day at the Johnson and Johnson annual shareholders meeting in New Jersey, U.S.A.. While we do recognise Johnson and Johnson’s efforts to develop this effective drug, the corporation must take urgent steps to make it affordable and accessible for people who need it. The pharma company currently sells bedaquiline for $400 for a six-month treatment course to countries eligible to buy the drug. Bedaquiline is just one of four or more medicines needed to compose a treatment regimen for drug-resistant TB (DR-TB), and most people require the drug for longer than six months.
MSF's Access Campaign and MSF-USA held a demonstration across form the J&J shareholders' meeting on April 25, 2019, in New Brunswick, New Jersey. The message was for J&J to bring down the price of newer TB drug bedaquiline to $1 per day. Copyright:Melissa Pracht/MSF
Patent barriers continue to restrict access to essential medicines across the world and domestic patent laws usually draw the ire of large pharmaceutical companies. Last month, on the eve of World Intellectual Property Day, the United States Trade Representative released its annual “Special 301 Report,” that names countries under a ‘watch list’ demanding more stringent intellectual property standards and enforcement. India has once again been featured in the list over measures taken by the patent and legal authorities to try and protect access to medicines. India has been featured on the list every year since 2005.
India’s patent and drug regulatory laws and policies have long helped protect generic competition, ensuring affordable quality generic medicines globally. Such pressure by trade authorities violates the integrity and legitimacy of the system of legal rights and flexibilities created by the already accepted Trade-Related Aspects of Intellectual Property Rights (TRIPs) agreement, signed by all member nations of the World Trade Organization. MSF has maintained its stand urging governments to continue to reject any pressure from pharmaceutical corporations or their political allies to change their domestic public health safeguards in intellectual property laws.
This year, USTR specifically mentioned Malaysia in its report due to compulsory licensing “concerns.” In 2017 Malaysia issued a compulsory license for hepatitis C drug sofosbuvir making it the first country in the world to issue a government use compulsory license to treat hepatitis C. On World Intellectual Property Day this year, MSF released a statement urging the Malaysian government to reject any pressure to reverse its decision of granting a compulsory license. Direct-acting antiviral (DAA) medicines such as sofosbuvir have presented as a treatment breakthrough for people with chronic hepatitis C, with cure rates of up to 95%, and far fewer side effects than previous treatments. In many of the countries where we work, MSF is able to provide generic DAAs at US$120 for a 12-week treatment course of sofosbuvir and daclatasvir, sourcing these two key HCV medicines from quality-assured generic manufacturers in Egypt and India. It is important that the drugs continue to be available at an affordable price. MSF has maintained its stand on compulsory licensing existing as a much needed and legally permissible tool to overcome patent barriers where necessary.