The cancer rate in the United States is not slowing. Leaders in the cancer community are searching for new ideas or ways to address the problem. Two relatively new ideas with promise include DNA sequencing of rare tumors and patient participation. Both could use more funding from Congress. Where will Congress find the money?
Many organizations believe patients involved in their own care accelerates cancer research. The National Institutes of Health (NIH) has made it a priority. This is partly due to the Cancer Moonshot program and its blue ribbon panel of experts who listed direct patient participation first in their list of recommendations. Another organization working to this end is the National Cancer Institute (NCI)’s Center for Cancer Research (CCR).
Guided by the blue ribbon panel recommendation the CCR has created My Pediatric and Adult Rare Tumor Network (MyPart). https://www.cancer.gov/nci/pediatric-adult-rare-tumor/rare-tumors They believe patients are critical in the research and treatment process and want the patients to be part of the team.
They think patients who participate in MyPart need greater access to their research data and so created a patient portal whereby the patient can view:
- Their data
- Informed consents
- Research relating to their type of cancer.
The CCR is working with advocacy groups and using social media to promote clinical trials with patients as team members. This is a plus for researchers who need more patients with their tumor samples allowing them to test new treatment therapies.
The CCR also recommends that patients and others contact Congress to educate them about the significance of rare tumors and ask for greater funding. Rare tumor research has not had the attention nor funding it deserves. Compiled together, the rare tumor group is large and accounts for 25% of all cancer deaths.
At the hospital level, more and more cancer patients are participating in their treatment by requesting their medical records, pathology reports, after visit summary, test results, slides and tissue blocks. They seek second opinions, want access to tumor board meetings and ask for help with clinical trials.
Rare tumor research and direct patient participation programs are slowly becoming a reality. Again, many believe that this will quicken the pace of research producing greater treatment options for the benefit of all cancer patients.
Given the promise of these programs the researchers are on the look out for greater funding. Could Congress be motivated to redirect money from other areas of the budget to cancer research?
Luis Alvarez the brave cancer stricken NYPD detective, who worked at the September 11 attack, recently appeared before Congress to remind them to pass a measure to help his fellow first responders even if it were too late for him. He said “You made me come down here the day before my 69th round of chemo and I’m going to make sure that you never forget to take care of the 9/11 first responders.” He died two weeks later from cancer.
The House and Senate quickly took action with the passage of a bill to fund future care and sent it to the President. President Trump gave final approval ensuring that a victims compensation fund never runs out of money. This is an example of Congress motivated in a bipartisan effort to fund the bill. That same type of bipartisan effort applied to other programs has the potential to save billions of dollars.
A prior cancerbeast.com blog states that a broken immigration system equals wasted dollars (see Los Angeles Isn’t Taking Care of its Own). Given this wasted money, should cancer patients everywhere take a lesson from Luis Alvarez and rally before Congress to remind them they could be better and redirect funds?
Congress has an obligation to taxpayers to find wasted money & duplication of services. A good place to start is immigration reform. This would help both immigrants and taxpayers. More importantly it would help cancer patients. It’s time.
