"Everything, or everybody, was on the move in every direction... There was no place to stop, no place to dawdle, you either moved on or got mowed down." So was I alerted by Kalpish Ratna, the pseudonym of surgeons Kalpana Swaminathan and Ishrat Syed, through their novel, “Quarantine Papers”. Mumbai is their stage but not even their book could have prepared me for transitioning from a spotless, meticulously staffed and serviced Singapore Airlines aircraft, departing from Changi airport, the epitome of order in Asia, into the throbbing, chaotic heart of India. The heat and humidity hit me as hard as the smell of diesel, getting me ready for a 3-hour cab ride through pot holes (a few) and rain (a lot) to Nashik, in Maharashtra, India’s second most populous and third largest state, where I volunteered as faculty for the first ASCO/ICON Cancer Research Workshop in September 2012.
Physicians and patients in emerging markets often join clinical trials in order to be able to have access to medications that might otherwise not be available in settings with limited resources. Globally, it has been estimated that 30% of clinical study participants now come from countries outside North-America and Western Europe, up from less than 5% a few decades ago. The cost per trial subject in India can be 90% lower than the cost in academic centers in the United States. Cheaper clinical trials may eventually translate into lower prices for drugs in low and middle income countries but it also raises important questions - such as the adequacy of ethics oversight and informed consent, financial compensation and potential conflicts of interest, inadequate regulatory control, and potential ethnic differences in treatment results. To that end, ASCO has been working with colleagues around the world in an effort to provide independent, academic-oriented, education on all aspects of clinical research through a series of events under the International Clinical Trials Workgroup of which I am a member.
ICON, the Indian Cooperative Oncology Network, ASCO’s local partner for the meeting, aims to improve the prevention and treatment of cancer through education and high quality clinical research and to promote oncology as a subspecialty in India. Co-organized with the United States National Cancer Institute (NCI), ASCO, and the Oncology Nursing Society (ONS), and with participants from all of India and faculty from the United States, Europe, Singapore and India, the Cancer Research Workshop included lectures and small-group mentoring of young investigators. Over a day and a half we covered topics such as the design and conduct of clinical trials, informed consent, ethics committees, adverse events and how to obtain funding for research studies. The interactive and mentoring sessions were very lively, clearly reflecting the Indian tradition of public debate and intellectual pluralism we have come to know in the United States through Amartya Sen’s book, “The Argumentative Indian”.
Training and practicing in North and South America and in Southeast Asia have clearly shown me that access to treatment and ethnic differences matter in cancer care, research and education. Not only are there wide variations in risk factors and incidence of specific malignancies but also in treatment practices and response to therapy, as well as in cultural aspects. Visiting India was a unique opportunity to meet new friends who are working at the forefront of both issues, including colleagues that have joined the Ethnic Research Initiative in Cancer, an NGO for which I serve as a council member, and that hopes to increase research and mentorship on this particular subject. Furthermore, India has recently issued a compulsory license for the cancer drug sorafenib; which, while controversial, is an important instrument for access to medications that many low and middle income countries are likely to use more often as, at a minimum, a negotiating tool when discussing drug prices with industry. In India, several companies have started to use price discrimination, which despite its inequitable sounding name is an important concept in economics and business. It consists of charging different prices for the same product in different markets or segments of a market, usually based on a consumer’s ability to pay and on elasticity of demand. Also called differential, tiered or equity pricing, it is a common practice in most industries outside healthcare, where discounts and rebates are common place, allowing companies to expand the number of customers who are able to afford its products. Price discrimination policies have allowed for successful distribution of lower-cost vaccines and AIDS medications in the developing world and we hope it will also help increase access to cancer medications.
Exhausted after a busy and exciting weekend, we had a pleasant surprise on our drive back to the airport. Our local friends brought us to enjoy something I did not even know existed: an Indian Vineyard and wine. Feeling at home drinking a (very good) local Shiraz while eating Northern Indian food, I couldn’t but hope to be invited back in the future.