Talk about healthcare: sequencing, personalized medicine, guidelines, antibiotic research and more

A few months back, a friend and I got the idea to start organizing a group of people to talk about healthcare. Once a month, a handful of people from different background would gather, be it medicine, consulting, research, policy. A casual round table, each bringing a topic that matters to oneself — because we all care about healthcare. So we gather to learn about the finance side, the policy side, the medical side, the research side of the vast industry grouped as healthcare. We had the first of the meetings this Saturday, September 1, 2017.

Present were: a Masters student, two healthcare consultants focused in policy and oncology products, and two doctors focused in infectious diseases and cancer research.

Opening topic: how do we feel about sequencing our whole genome? The question of privacy, storage of personal data with or without the patient’s consent, reliability of predictions made based on the DNA alone all came up. We all agreed future is in personalized medicine and policy must follow to deal with the issues of privacy, and use of the vast genetic data, but consensus is easy when we have five individuals working and studying in Boston with similar political view and educational backgrounds (despite cultural diversity representing Peru, Germany, and South Korea). The classic question of pricing personalized medicine doesn’t come up, because we find a road block: doctors in America often do not have visibility into drug prices and patient out of pocket costs.

One of the doctors, who studied in Peru and now practices in Boston comments on how he used to know the drug prices back home — he would know the budget of the patients and the drug prices after insurance pays its share. Another doctor from Germany says patients never have to worry about prices because it’s completely covered after taxes. So why is it so hard for America to get it right?

On a high level, it’s the variety of insurance companies and plans available that gives the variability. Yes, this gives more payment options to choose from but what exactly are the pros and cons? May be a worthwhile topic to discuss further, especially with the brewing ideas for single payer system.

Another difference in medical practice comes up: the use of guidelines. Guidelines provide treatment algorithms so therapies can be selected by a sophisticated process of elimination. In the US there are ones like NCCN that are frequently used but are never quite mandated. Different story in Germany, apparently where guidelines are mandated(unless it doesn’t exist due to rareness of disease, etc). This means drugs that make it in to the guidelines will likely be the only successful ones — makes for a incredibly efficient and uniform (equal standard of care) across a country compared to the US where “medicine is almost an art more than a science” (quote from a US physician), but it also limits the market from driving novel drug launches, unless a drug is significantly more efficacious or cheaper. Who decides what drugs are “significantly” more efficacious? Lots of ethical questions up in the air still.

We ended with a more philosophical note, trying to answer the question of antibacterial resistance: how do we get pharma to develop new antibiotics, when all doctors would save it for last resort and the product would never be used? Developing a product knowing it would never be used unless there’s a superbug disaster — not the best incentive to get big pharma to fund a research. Come right back the question of the role of a government in healthcare.

More discussion on IBD/colitis, among other topics are to follow in the next month’s meeting. What are your thoughts on above mentioned areas of healthcare? Comments? Share with us what you know!