By
E. Anders Kolb, M.D.
I recently had the honor of speaking at the TIME 100 Health Leadership Forum in New York City. The event brought together a variety of healthcare experts to share insights on key issues facing patients and healthcare professionals. It included panel discussions on bridging gaps in women’s health and protecting health care professionals’ mental health.
My panel, Reimagining Care: Living Well, Living Longer, explored how breakthrough therapies and innovations in treatment and preventive care are helping patients live longer, fuller lives. I was joined by actor and activist, Selma Blair, who shared her experience with multiple sclerosis (MS), and Dr. Andrew Diamond, Chief Medical Officer, Amazon One Medical, an online service that aims to make primary care more accessible and convenient through in-person and telehealth visits.
We had a lively and provocative discussion, moderated by TIME Senior Health Correspondent, Alice Park. Here are the key themes that emerged from our conversation.
Innovative therapies are changing lives
Thanks to research and groundbreaking therapies, we are now seeing many blood cancers, as well as autoimmune diseases like lupus and MS, being treated as chronic illnesses. Blood cancer has long been a proving ground for advancements—from chemotherapy in 1949 to today’s precision medicines, stem cell therapy, and immunotherapy, with some of these are now being used to treat other illnesses.
But because there’s no prevention for blood cancer and many of these other diseases now treated with blood cancer therapies, timely and accurate diagnosis and treatment is critical.
Blair was diagnosed with an aggressive form of MS in 2018 after years of recurring, nagging and non-specific symptoms. She suspects she’s had it since 1979, when she can first remember having symptoms on-and-off. Before her diagnosis, she said she was living in a state of “permanent sickness.” Her experience is an example of how difficult it can be to diagnose rare and/or indolent conditions, which can be insidiously debilitating. Without proactive and preventive care, patients like Selma live a new normal every day, every week, and build a tolerance for delayed diagnosis. This is disempowering and makes recovery even harder. “I’d just been so tired for so long, and my damage had been accruing,” she said.
After she was diagnosed, Blair had a bone marrow transplant and believed it was helpful in slowing the progression. Though she did relapse, she underwent chemo and is doing well. She recalled telling her mother she’d been diagnosed with MS, and her mom saying, “Great, they have so many things for that now.”
Blair said it’s been exciting to see treatments used in new and different ways, and to be part of a patient community benefiting from research and innovation. “I was so sickly for so long that I was relieved to get any diagnosis,” she said. “I just wanted hope.” She has now been relapse free for a couple of years.
Ongoing primary care becomes even more essential as survivors live with their illnesses
As more people are living as survivors and relying on longer-term treatment, consistent access to ongoing primary care for their disease and the potential side effects of treatment is important. So is managing co-existing conditions and preventing other health problems from occurring.
Dr. Diamond said that the concept for Amazon One Medical started with the idea of being able to provide longitudinal care, focusing not only on preventive care, but on a holistic approach that addresses all of the issues that a patient may be dealing with throughout their lives. He described Amazon One Medical as “first and foremost a medical practice” that makes primary care more available through both in-person and telehealth appointments and a digital team available 24/7. “It really starts by making things easier for the patients,” Dr. Diamond said. With the assistance of Artificial Intelligence (AI) and relationships with large academic medicals centers that can provide specialty care when needed, he said practices like this will become increasingly important in the future as a way for people to get care for their chronic conditions quickly and conveniently, outside of the ER or specialists’ offices. And “it will enable specialists and hospital staff to focus on the patients who are most in need of acute care,” he added.
Cost is a barrier to preventive and specialty care
Dr. Diamond noted that “another important element of what primary care does when it’s going well, is reduce total costs” for both patients and insurers. He estimated that twenty to twenty-five percent of what we currently spend on healthcare could have been avoided altogether if patients had access to timely appropriate care in a primary care setting. Yet, he and the rest of us on the panel agreed that cost remains a barrier—even for those with good insurance coverage.
Even as a celebrity, Blair had to fight for years to get insurance to cover the MRI that ultimately diagnosed her MS. She said, tongue in cheek of course and with her sense of humor on full display that “cost of treatment, even for a beautiful rich and famous woman like me was brutal,” adding that “the money thing really wears you down, when you’re already exhausted from the diagnosis.” She felt fortunate to have someone to help her with the red tape and finally get insurance to cover the MRI and subsequent treatments but still struggles to navigate the financial labyrinth of healthcare.
If she still struggles, what hope is there for the rest of us?
As a hematologist oncologist, I’ve seen the benefits and challenges of discovering innovative life-saving treatments. As we advance and develop more and better therapies, cost and complexity of care is increasing. Cost of care is what the payer (insurance) is paying as well as the gaps the patient pays out of their own pocket. Complexity of care is what the household is paying—whether it’s travel, parking, lost salary, or whatever other costs are incurred to access specialty care or a clinical trial that may only be available far from home.
For example, Car-T cell therapy, a curative therapy for leukemia and lymphoma, is typically only available in certain major medical centers, meaning patients may have to travel to receive their care. And it’s expensive—running $500,000 to $1 million a pop. Even if someone is adequately insured, a 5% co-pay on a million-dollar product is just not feasible for many families.
Our studies at Blood Cancer United showed that nearly half of patients diagnosed with cancer will burn through their entire life savings within two years. Curative therapies are leaving families with generational debt. We need to change the conversation.
I believe that when thinking about cost of care for insurers, the nation, and the patients we serve, we need to think in terms of preservation of life. Because “cure” in the cancer world often means lifelong treatment. Currently we talk about cost in terms of our annual national budget cycle. We need to think about the other side of the balance sheet too—the years of life that are gained and that can be measured in hours worked and contribution to the Gross National Product (GDP). We also need to consider that in many instances, inadequate care due to poor coverage is the most expensive option of all.
Before our panel started, I had talked to a woman named Erin who was diagnosed with chronic myeloid leukemia (CML) in 2001. She was one of the very first patients treated with the precision medicine Gleevec—a drug that can cost up to six figures per year. She’s been on the drug for most of the past 25 years, only going off it to have her three children. Think of that value—not just the birthdays, graduations, and beautiful moments Erin got to share with her family, but the value of giving rise to the next generation. The value that generation brings to our country in the years ahead.
Improving the system
How do we finally turn the boat around with the U.S. healthcare system to prioritize prevention and incentivize coverage of potentially curative yet expensive therapies? These are the tough questions our moderator Alice Park asked in the final minutes of our discussion.
Dr. Diamond said that building primary care at scale can address problems like an insurer’s refusal to cover preventive scans. He said, “moving toward more value-based care is important.” If primary care physicians are incentivized to do well when their patients stay healthy, he feels they’ll be more likely to invest in their preventive care.
But he also said there’s a lot we can do to bring down the cost of preventive care, especially by bringing new technology to bear. “Thanks to technology, we can get to the diagnosis a lot more quickly today than we would have ten or twenty years ago,” he said. “You can ask questions of AI, and it will serve up the diagnosis, many times with much more accuracy than the human clinician could.” Clinicians can also use technology to offload administrative tasks, allowing them more time with patients.
With or without technology, having a primary care clinician who has the time and motivation to take you seriously makes a huge difference, and saves a lot of money in the long run, Dr. Diamond added.
Blair said she was thankful that she finally found a doctor she could really talk to—who was patient, always listened, and took the time to investigate symptoms that didn’t look like typical MS. She’s on a treatment that works for her right now and is happy to be relapse free. She said she’s confident that should she relapse, there will be a treatment available to help. “But in the beginning, my entire life was searching for a cure for what ailed me,” she said.
I think the other important piece is educating providers about the symptoms that could indicate something serious. For example, multiple myeloma has a high incidence among Black and Hispanic males over age 50 but can also affect younger people. There are so many examples of young males coming in with back pain and physicians not recognizing that as a sign of malignancy. Or as Blair described, a young woman coming in with symptoms that indicate MS and not being given an MRI. Provider and patient education can start with informed organizations like Blood Cancer United, that specialize in particular diseases. And it can continue with those organizations advocating for federal and state policies that protect patients’ access to care.
As Park said before closing out our session, “Let’s keep up the fight.”
Listen to our panel conversation.
Meet twelve blood cancer survivors.
About The Author
E. Anders Kolb, M.D., a world-renowned pediatric hematologist oncologist and researcher, is president and chief executive officer of Blood Cancer United, a global leader in the fight against cancer.
Dr. Kolb has devoted his life's work to caring for children with pediatric blood cancer and conducting research to find cures. Before joining Blood Cancer United, he spent 15 years at Nemours Children's Health, where he built the Blood and Bone Marrow Transplant Program and most recently served as chief of the Division of Hematology and Oncology, Director of the Moseley Foundation Institute for Cancer and Blood Disorders, and Vice Chairman for Research in the Department of Pediatrics at the Sidney Kimmel Medical College at Thomas Jefferson University.
Dr. Kolb has authored or co-authored more than 150 articles in peer-reviewed journals and received numerous awards.
