Cancer Survivorship: Pathways to Health After Treatment:
Survivor-Researcher Mentor Program
“Economics of Survivorship” a personal reflection by Gib Smith
Vice President, Childhood Cancer Ombudsman Program
Board of Directors, Childhood Brain Tumor Foundation
Without one’s health, economic progress for survivors is impossible. With this in mind, I have decided to focus on one issue in particular–access to late effects clinics. Access to late effects clinics is a double-edged sword for cancer survivors. More often than not, insurance companies do not cover such care, which is compounded by the serious dearth of long term follow-up clinics available to the estimated 9.8 million cancer survivors today.
Long term follow-up care is expensive, particularly depending on the type of cancer with which one is diagnosed. Generally, such care encompasses MRIs, X-rays, a bevy of blood work, physical examinations, EEGs, EKGs, and so on. These tests are expensive for survivors or anyone else. It seems apparent to me that survivors require regular follow-up testing as a viable means of preempting the onset of late effects, and at the very least putting the survivor in a position to effectively manage and mitigate them. Currently the Children’s Oncology Group provides guidance on long term follow-up care for pediatric cancer survivors (http://www.childrensoncologygroup.org/disc/LE/default.htm); however, comparable guidelines have not been developed for adult survivors. One way to get around this barrier, if the survivor has access to decent and affordable health care coverage (a whole other issue), is to enlist the aid of their primary care physician. In my opinion, internists make the best “pupils.” You can train your internist, if he or she is willing, to provide you routine long term care under the guise of a yearly check-up. Most time you will need to provide the physician with a copy of your medical records, including treatment and doses, and a list of potential long-term effects. I was able to successfully do this twice. I have no access to a long-term late effect clinic and was forced to seek alternative options. I believe this should be the exception rather than the norm particularly for those survivors treated at academic medical institutions and research centers such as NCI.
The most disturbing information I learned at the conference was that despite the present and justified focus on survivorship issues the number of late effect clinics has not increased since 1997 despite the dramatic increase in survivors. The lack of resources available to cancer survivors makes it all the more difficult, from economic and practical standpoints, for survivors to access the much needed follow-up care. More survivors are forced to pay out-of-pocket for services or forego late effects treatment altogether. Not only is this dangerous from the survivor’s health perspective, but also the loss of valuable resources and knowledge to be gained from these survivors is detrimental to the well-being of future survivors and improved modalities. We must all remember that surviving does not end with the conclusion of treatment, but continues with us the rest us of our lives. I view the participation in late effects clinics as a real, concrete vehicle to help future survivors ease the burden of potential late effects, improve their overall quality of life, and promote new and more effective treatments.
In my opinion, academic hospitals, research centers and the like treating cancer patients have a moral obligation to provide systematic and long-term follow-up care for survivors, not only for the immediate benefit of survivors, but for future survivors as well. Our ultimate goal is to eradicate cancer and all late effects and this can only be accomplished through dedicated and comprehensive research involving survivors. I laud NCI and their focus on survivorship issues as well as their goal of eliminating cancer in 2015. This was one of the main themes of conference. However, I was surprised to learn that despite being the leading proponent of the survivorship efforts, NCI only offers a long-term late effects clinic for sarcoma patients treated there.
As the leading force behind the survivorship movement and the goal of eliminating cancer in 2015, NCI should be setting the standard for late effects clinics, leading the way as part of the solution and not part of the problem. With hundreds—maybe thousands—of survivors to its credit, NCI has the opportunity to mine a wealth of data from its survivors. Such data would certainly help them achieve their 2015 goal and help to improve the plight of current and future survivors.
These issues can be directly related to economics. Without the resources to fund new long-term late effects clinics, more survivors will be forced to pay out of pocket or forego follow-up care altogether. The data lost from these survivors can only retard the survivorship movement and slow progress and research. I realize increasing the number of and access to late effects clinics is no small task despite its importance. At minimum, upon completion of treatment, each patient should be provided a personal protocol outlining the potential late effects he/she may be at risk for, the types specialists needed to manage these late effects, and the regular tests to be done to mitigate them.