CEO, Cancer Support Community
Kim Thiboldeaux is CEO of the Cancer Support Community. Kim joined The Wellness Community in 2000 as President and CEO. In 2009, The Wellness Community and Gilda’s Club joined forces to become the Cancer Support Community, one of the largest providers of social and emotional support worldwide. Kim is a regular contributor to the Huffington Post Blog.
You can’t seem to turn on the news right now without hearing about the coronavirus. It is headline news. We are now seeing cases of the virus spreading outside of China in places like Japan and the US. And there still many unanswered questions. We have also seen a proliferation of misinformation floating around the Internet and social media about the virus.
Since I began working in Oncology over 20 years ago, we have been discussing the challenges around recruiting adult patients into cancer clinical trials. Even after numerous efforts and multi-million dollar investments, the rate of enrollment has remained flat — around 3–5%. As we are witnessing exponential progress in the treatment of cancer, increasing enrollment in trials is more important than ever. Yet, many of the same barriers still remain.
I truly believe that Vice President Joe Biden and Dr. Jill Biden, the Founders and Co-Chairs of BCI, are leading the most important conversation happening about cancer in America today. The Summit gathered hundreds of scientists, researchers, patients, advocates, government officials, media influencers and business leaders with the goal of accelerating our progress in the fight against cancer.
At the end of 2017, I was invited to visit the Navajo Nation and tour the Tuba City Regional Health Care Corporation in Tuba City, Arizona. At this particular health care center, a group of dedicated individuals led by CEO Lynette Bonar, a nurse and military veteran, is bringing the first-ever cancer treatment program to the Navajo Nation. This is a significant step forward in righting an inconceivable wrong.
Just like financial toxicity, it is important to capture the concerns and trends of patients’ concerns. In our organization’s case, the abstracts CSC released at ASCO examined everything from patient-physician communication and quality of life to impact on the family. It is now well-documented that in order to achieve the best outcomes for patients, we must treat the whole person — not just the disease.
As the calendar turns to 7.17.17 today, and I celebrate my 17th anniversary at the Cancer Support Community (yes, I am playing the lottery today), I can’t help but reflect on the past 17 years and contemplate how the cancer patient experience has changed during that time.
As I sit here in Washington, DC and witness some of the Congressional and Administrative actions and activities of the past few weeks, I can’t help but think that we are potentially taking some dangerous steps backwards as a society as it relates to how we treat the neediest among us – and also related to our investments as a nation in science and medicine.
Has everyone seemingly forgotten that we are talking about people’s lives here? It’s hard to process all that has happened in the past few weeks with the introduction, then withdrawal on Friday of the American Heath Care Act. Was the bill pulled back because it was so bad or because it wasn’t bad enough?
As I think about the upcoming holiday season, I can’t help but reflect back on a report that Cancer Support Community issued on November 30, 2016 entitled, Access to Care in Cancer 2016: Barriers and Challenges. The report analyzes the experiences of 1,046 people who have or have had cancer, and highlights their financial and access challenges during their cancer treatment, and for some, for years after treatment has ended.
As the summer draws to a close and I reflect back on its high points, I can’t help but think about the Cancer Moonshot Summit hosted by Vice President Biden at Howard University in Washington, DC on June 29. The Summit was, in essence, a call to action and served to convene doctors, nurses, scientists, researchers, patients, families, advocates and others under the banner of Ending Cancer as We Know It.
I always look forward to attending the ASCO (American Society of Clinical Oncology) Annual Meeting. This was my 20th consecutive year attending the meeting. It is perhaps the most important cancer-related meeting in the entire world, bringing together more than 30,000 oncology professionals from all over the globe to discuss new innovations and confront current challenges in the field of oncology. I was particularly enthusiastic given the theme of this year’s conference: Collective Wisdom - The Future of Patient-Centered Care and Research.
If we are going to find the cure, we need to change the perception of clinical trials and have a conversation about clinical trials begin between patient and doctor from the moment of diagnosis. There is general agreement in the medical community that clinical trials are the best way to learn what works in treating diseases like cancer.
In 1971, President Nixon declared a War on Cancer and signed the National Cancer Act of 1971. So why, 45 years later, is curing cancer the nation’s new moonshot? What has happened in the intervening years to think this is now possible?
I seem to be getting more and more calls from people just diagnosed with cancer who simply don’t know where to start and what to do. These people come from all walks of life and many are smart, highly successful individuals. But facing a cancer diagnosis is not like anything they have faced before. It’s monumental, life-altering. They feel overwhelmed and their world has seemingly spun completely out of control. One of our goals at the Cancer Support Community is to help people with cancer and their loved ones become empowered because with that feeling of empowerment comes a feeling of control and a reduction in anxiety.
Recently, a friend confessed to experiencing cancer awareness month fatigue. For weeks now, her Facebook newsfeed and Twitter updates were filled with one cancer reminder after the other. She felt completely overwhelmed by the sheer quantity of cancers and bombarded by the amount of related information. Given my field of work, she felt guilty about even raising the issue, but she felt compelled to ask me: “Tell me the truth, Kim. Does it make a difference? Does it actually help?”
Not too long ago, I had to make an appointment for a family member with a specialist at a large academic medical center in New York City. The referral was made by a community doctor as a result of certain concerns raised by the doctor about the results of various tests and scans. After a week of leaving messages and talking to four different people at this medical center, I was told that the earliest the doctor could see us would be in October. October! And here we are in August.
Warren Buffet once said, “Price is what you pay. Value is what you get.”
In a time when the price tag on health care continues to rise, and more of the cost burden is being shifted to patients, there is a crucial conversation taking place in the cancer world about how value is defined. It led us at the Cancer Support Community to ask - do patients define value the same way as the health care system? And we sought to get answers by first asking the experts- the patients themselves- a single question: “When considering your cancer experience, how do you define value?
As I have been reading and watching the media coverage on the Supreme Court’s decision to reject the argument that patients in the 34 states that defaulted to federal exchange should not be entitled to receive subsidies based on 4 words in the law - “established by the state” - I have been surprised and disappointed that so many stories in the press have focused on the 2016 presidential election and not on the 6.4 million Americans who were potentially at risk of losing their subsidies and therefore, their recently acquired and much-needed coverage. Shouldn’t we be talking about the millions of individuals and families who now have affordable health care - or even health care at all - for the first time in their lives? Or talking about patients - like those with a serious illness like cancer - who can no longer be denied coverage based on a pre-existing condition?
Financial toxicity. It’s a relatively new phrase pioneered by Yousuf Zafar, MD, MHS from Duke, that’s gaining traction in cancer circles and making its way into mainstream vernacular as a means of equating the effect of out-of-pocket expenses with the adverse physical effects of cancer care - things like nausea, vomiting and hair loss. It sounds insidious, poisonous and painful, and based on the findings of my organization’s new study “Insight into Patient Access to Care in Cancer,” I would say that it’s spot on.
Sometimes a realization hits you and stops you right in the middle of whatever you’re doing. I recently had such an experience.
I was invited by a major corporation to be a panelist at their annual retreat. I sat alongside scientists, doctors, MBAs — leading minds in cancer treatment and care. The goal of the retreat: the company wanted to look beyond its walls to make sure there were not important trends and insights in the cancer landscape that they might be missing in their planning and strategic development