The Atlantic LIVE, a division of The Atlantic magazine that puts on events all year on healthcare, culture, technology, education, and more, put on PULSE – On The Front Lines of Health Care on June 13th in Boston. I was very excited when I first heard about it because it including panels on opioid prescription and gene editing through CRISPR, among other subjects that I’m interested in. And it was in Boston, and free! I went, and it was well worth the spoons. Read on for my review and details about the panels on mental health, opioids and gene editing.
It was a hot day, and we had to park far from the building, so I was glad I had a rental wheelchair while mine was being built. My husband came with me and pushed me through the hot Boston streets to 60 State Street, a huge, imposing, skyscraper. The conference was in the State Room, a modern, fancy event room. When we got there, we were greeted with name tags! I had registered beforehand but honestly had no idea what the event would be like. I was a little intimidated by the setting, and when we went into the room, I felt totally out of place. It was filled with doctors, scientists, and journalists. I was thinking “there must have been some mistake that they let me in!”
Once I got over the initial shock of the caliber of the event, I settled in and became completely captivated by the speakers. It was a day long event but I chose to go in the afternoon, both because I didn’t think I could last the whole day and because the panels I was the most interested in were then. The first panel we attended, Digital Connections for Better Health, introduced us to several founders of new technology to help connect doctors and patients, including Jay Desai, the founder and CEO of Patient Ping, a service that will notify all of a patient’s providers when and where they receive care – for instance, they will get a “ping” if their patient is admitted to a hospital. Also on the panel were Jay Komarneni, the founder and chair of the Human Diagnosis Project, which is “a worldwide effort created with and led by the global medical community to build an online system that maps the best steps to help any patient,” and Thomas Goetz, the co-founder of Iodine, an online repository of medication information. I was encouraged that people are out there trying to improve the patient experience.
The next panel, Mental Health – From Prison to Primary Care, was even more interesting to me. Prison reform, and criminal justice reform in general, is something that I feel passionately about, so I was glad to hear about efforts to help mentally ill patients in prisons and to keep them out of prison in the first place. I was alarmed, however, to hear from Christine Runyan, a professor of family medicine at UMass. She was speaking about integrating mental health care with primary care, which I vehemently disagree with. I will expand upon that in another post, but the short version is that primary care doctors, in my experience, have a very limited view of mental health care and other specialties, and are not the right specialty to be handling it. You would not want a cardiologist handling your digestive disorder either. I’m not bashing primary care doctors – they have a very important role in helping patients with standard illnesses, helping them find specialists when the problem requires it, and managing chronic conditions, among other things.
I think primary care doctors should be aware of a patient’s mental health diagnosis and know when to refer, but everything mental health related should be handled by a psychiatrist. Mental health is complicated and must be handled with a delicate touch, and an incorrect diagnosis can negatively impact a patient’s physical care for years. Incorrectly prescribed psychiatric drugs can be incredibly damaging to a patient. I can’t stress how dangerous I feel this idea of integration is. I was happy to hear Susan Fendell from Mental Health Legal Advisors voice the same concern: “Women with psychiatric diagnoses get much later diagnoses of cancer because there is an assumption that the pain is a somatic symptom, so my question is how do you deal with the fact, and there are numerous studies showing the inferior physical health care once an individual is known to the doctor to have a psychiatric diagnosis, when you have integrated care and the individual does not have any control over who sees their psychiatric information except for therapy notes, which is almost nothing.” Professor Runyan’s response was basically that she advocates for her patients, but didn’t address Ms. Fendell’s concern.
The next panel was the one I had been looking forward to the most – Rewriting the Prescription on Opioids. However, I was disappointed. The entire focus was on acute pain and reducing opioid prescription in the acute setting – surgeries, injuries, etc. There was no mention of the impact this was having on patients with legitimate need, no mention of the proper use of opioids and where they are indicated, and, most dishearteningly, no mention at all of chronic pain. I couldn’t let it slide, so I spoke up in the question and answer section and said, “I’m a patient and a blogger, and I wanted to ask how you would respond to patients who use opioids for chronic pain disorders and are now having trouble obtaining their medication. Personally, that’s been a problem for me and, I know, many of my other friends. My doctors personally approve of them, but they all say they don’t prescribe them, it’s their policy, so what would you say to that?”
Dr. Barth (one of the panelists) responded by saying, “Well, what we’ve mainly been focusing our discussion on is acute pain, not chronic pain, so you’re a whole different story.” I interjected and said, “I think that’s part of the problem though, so much of the discussion is about acute pain, so chronic pain is being sidelined.”
Jon Rodis also spoke up and said, “The CDC set up guidelines, they were guidelines, they weren’t mandates, and this basically has sprung up out of hysteria … I’ve lost friends to heroin overdose, but the majority of cases have been heroin, it hasn’t been hydrocodone, it has been fentanyl and heroin. So I guess I’m making more of a statement than a question. I understand acute pain, the things that you’ve been saying are important, Doctors have to be more responsible for what they prescribe. Those that are chronic pain patients they have doctors that are right now being threatened by their own states because they’re prescribing to chronic pain patients that have been their patients for over 10 years, so this is the baby being thrown out with the bathwater. So we really need the medical community to stand up and defend the chronic pain population.”
You can view the rest of discussion here, the questions begin at 16:35.
The final panel was on gene editing, focusing on CRISPR, with Feng Zhang, the co-founder. I was spellbound by what I was hearing – it was almost like science fiction instead of actual science breakthroughs that are happening right now. I don’t really have the space or the scientific prowess to fully explain CRISPR. Suffice to say that it is a genome editing tool that behaves like a “search and replace” function (Zhang’s words, not mine!). The possible implications are endless – ending malaria by sterilizing the species of mosquitoes that carry malaria without affecting those that don’t, creating plants that are resistant to disease, editing the genes in pig organs to allow them to be implanted in humans, treating HIV by removing the virus’ DNA, and possibly one day treating genetic disorders and defects in humans. We are a long way away from any human applications, but it’s on the horizon. The implications are staggering, but they bring with them a raging ethical debate, which will have to be hashed out before any kind of human use is even considered.
I really enjoyed the conference and still can’t believe I was able to go for free! It’s given me a lot of food for thought and topics to explore in the future. I haven’t reviewed each panel, just the ones that I found the most interesting. You can view the full video of each panel below.