Access, Value and Cost of Cancer Care

On Friday, September 11th I attended a conference in Washington D.C. hosted by NCCN (The National Comprehensive Cancer Network), which is an educational body representing a group of 25 NCI designated comprehensive cancer centers. The mission of the NCCN is "to advance the quality, effectiveness, and efficiency of oncology care so that patients can live better lives." The main activity of the organization is the development and publication of practice guidelines for oncology care. My charity, The Lung Cancer Research Council, is partnering with NCCN to sponsor a digital Lung Cancer Patient Guide, to be distributed nationwide later this year.

The event was held at The National Press Club  and was well attended by about 200 "stakeholders" including patients, oncologist, pharmaceutical companies, cancer centers, insurance companies, and drug distributors. It was a short but well organized one day event. I wanted to share some of the things I learned.

First of all, I have to say that much of the discussion was looking at the whole issue of the "continuum of cancer care" from 50,000 feet. We started off, however, on the ground with two cancer patients telling their stories. As it so happens, both were women living in California. One had a story about being diagnosed and treated for stage 2b triple negative breast cancer; the second story was about the diagnosis of a stage 1 uterine cancer. Both women were themselves in the medical field, with one being a Ph.D. in immunology. They were both treated at UCLA's City of Hope Cancer Center and provided a glowing evaluation of the compassionate care they received.

The 30 minutes of personal cancer storytelling set the scene for, as Paul Harvey would say, "the rest of the story" which was about access, value and cost of cancer care. 

The speaker that followed was a professor at the University of Alabama at Birmingham.  Her presentation was about the disparities of outcomes between adolescents, young adults, and adults with cancer and blood diseases. If I had to summarize the results of the study, it would be that that adolescents and young adults have not seen the same rate of improvement in outcomes as younger children and older adults. The question is why? Clearly, people who had access to a comprehensive cancer center had better outcomes. The problem, of course, is that not everyone has access to the best care available.

That presentation was followed by a panel discussion, moderated by Dr. Scott Gottlieb, from the American Enterprise Institute. Panel members included the head of the Mayo Clinic Cancer Center, the former Director of Healthcare Policy for the Obama administration and current healthcare policy wonk at the Brookings Institution, a corporate healthcare benefits expert, and a data provider/consultant focused on helping all kinds of business and government entities deal "market shifts" created by the the Affordable Care Act.

To be honest, this group of policy wonks was so high-flying and so big-picture that mere mortals like me could hardly understand the main points they were making.  The one thing I got out of it was that, given a choice, people choose the least expensive healthcare plan, which may not provide sufficient coverage in the case of a cancer diagnosis. Duh.

The other thing I got out of this panel was that the number of cancer cases and the cost of cancer care is going to steadily rise. Currently the direct cost of cancer care is something on the order of $145 billion a year, but that is expected to increase to $170 billion by 2020. We also have a problem with greater demand for oncologists as the baby boomer generation ages. We are not training oncologists fast enough as the current generation of oncologists retire. The number of cancer cases is expected to increase 45 percent by 2030. That's a problem that needs to be addressed now.

The next panel brought us back down to Earth. It included a comprehensive cancer center director, a patient advocate, a representative from the insurance industry, and an actuary who works on big data analytics for Sloan Kettering. What I got out of this discussion was that insurance companies don't see their role as subsidizing academic research centers. Many comprehensive cancer centers, which are also academic research centers, are out of network because the reimbursement rates offered by carriers are too low. The actuary on the panel made a good point that insurance companies don't capture the true cost of cancer care because of the way they organize claims data. If a patient has pneumonia, a broken hip, and lung cancer, they categorize these as three separate events or claims, when in fact they are one related claim. By far the gutsiest speaker on the panel was the representative from Aetna, an MD, who plainly said that comprehensive cancer centers are just too expensive. Giving such great care costs money.

The last panel discussed the cost conundrum. This panel included someone from Express Scripts, the prescription drug provider, another patient advocate, and three different comprehensive cancer center representatives. Different "strategies" are being tried to rein in drug prices.  I thought the patient advocate brought home the reality that drug prices are so high currently that, at the end of the month, there is no money left to pay rent or buy food. The healthcare system is bankrupting families. She told a story of how a patient she was counseling had an increase in her disability payment that now disqualified her for Medicaid. The situation was so dire that the patient gave up and decided it was easier to do nothing and live without treatment.

When it comes to caring for cancer patients, there is clearly more work to do.