As much as advice on drugs and therapy, patients need help with funds, tackling drug shortages and even a place to stay
A narrow tree-lined lane leads up to the Cancer Patients Aid Association tucked away inside the King George V Memorial compound, off a busy road in Mumbai.
The silent ambiance is misleading. It may look like any other administrative office, but step inside and you run into patients, sometimes children with their parents, looking for clarity on their cancer treatment and guidance to get their medicine at a lower price.
Conversations on cancer most often revolve around the high-cost of treatment and medicines, indeed a key worry. But people working with patients and experts watching the cancer drugs landscape say that attention should be also focused on other support features.
Trained people to administer newer medicines correctly to get the best results. And in no less measure, a place to stay for people travelling to big centres for treatment. Some of them end up staying on the pavements outside hospitals.
But none of this seems to be there anywhere on the radar of policy-makers. And the latest Union Budget has nothing to offer people living with cancer. Not surprising then, that CPAA's Mallika Narayan says matter-of-factly that Budget day was like any other day. A day spent working. The disappointment is palpable.
The government has to take a major role in healthcare for children, senior citizens and the general public, says Narayan. After all, they are collecting taxes from the people, she adds.
There are medicine shortages, people do not have money to buy medicines, they don't have places to stay when they come for treatment, she says. There are people willing to set up ‘dharmshalas’ for cancer patients to stay in the city, but the government needs to help with the land and see it is not misused, she points out.
The CPPA gets 150-200 cancer-related calls every day, says Vinaya Chacko, Executive Director. “We try and give some type of assistance to everyone who comes to the Centre. No one is turned away,” she says. But the difficult part is that patients need “quick help”, she adds, mentioning the specific case of bone marrow transplants. A procedure for those with blood cancer, the cost (about Rs. 20 lakh) puts it beyond some patients in India.
More than just price?
But access evidently has more layers to it. An IMS Institute for Healthcare Informatics study in June 2016 points out that “patients in only six countries had access to at least half of the 49 new oncology medicines launched in 2010 to 2014.” India got only seven of those drugs.
Murray Aitken, Senior Vice-President and Executive Director, QuintilesIMS Institute, explains the why. Different health systems are in different stages of development and maturity, he says. And, in India, there are broader issues around cancer care — diagnosis, treatment, the number of cancer specialists in the country and so on. Funding, be it out of pocket, through insurance or reimbursements, is only part of the problem.
“Even if there is access to the medicine, are they going to be used in the right way,” he asks, pointing to genomic testing, biomarkers in patients and the ability to assess if a new drug works effectively in a patient. Aitken stresses the need for trained clinical staff and infrastructure. There are centres in India capable of handling high-end testing and treatment, but the widespread use of new therapies will have to navigate these issues, besides the concerns on payments and patents, he explains.
Tata Memorial Centre Director RA Badwe says that the need is to optimise the delivery of care in common cancers and build the human resource in uncommon cancers.
Meanwhile, the global cost of treating cancer grossed $107 billion in 2015, an 11.5 per cent increase from the previous year. Naturally, payers are seeking more assurances that treatments get the desired outcome, observes the study, adding that this tension is set to continue. Clearly a worrisome reality and reason enough for India to pull together a much more layered approach to make a difference in the lives of people with cancer.