Families devastated by multiple types of cancer urge a cancer prevention agenda as part of the National Cancer Moonshot
A better way to prevent inherited cancer. This is what spurred patients and families with BRCA mutations, patient advocates and a handful of healthcare workers to convene in Burbank as part of Vice President Biden’s National Cancer Moonshot Summit. Joi Morris and Wendy Felson of HeritX moderated the June 29, 2016 Summit held at the Roy and Patricia Disney Family Cancer Center.
The questions posed by the Vice President’s office were viewed through the lens of families who have been devastated by multiple types of cancer. All participants in the HeritX-hosted discussion had lost multiple loved ones (or in the case of the healthcare workers, patients) to inherited cancers. These families had battled breast cancer, pancreatic cancer, prostate cancer, colon cancer, ovarian cancer, melanoma and leukemia. All families have children who are untested but may carry a known BRCA mutation putting them at very high risk for cancer. Accordingly, the primary focus at our meeting was how to prevent the cancers that have devastated our families for generations. Palpable fear gripped in the voices of parents who contemplate the almost certainty that their children will also develop cancer.
The number one priority: Prioritizing and incentivizing research to find non-surgical ways to prevent inherited cancers.
The group was encouraged and motivated by the Vice President’s remarks. “Prevention can save more lives than anything else we can do” particularly resonated with these families. Cancer prevention breakthroughs are urgently needed for families facing inherited cancer. Accordingly, the Cancer Moonshot should promote the interdisciplinary research necessary to find these breakthroughs. HeritX is launching this work. The patients and families in the room felt that the work being launched by HeritX is critical not only for their families but also as a gateway to preventing cancer overall and therefore critical to the Cancer Moonshot.
Below is the feedback from our meeting that was submitted to the Vice President’s office. If you want to add to the discussion of anything here please email JoiMorris@HeritX.org:
Putting the patient at the center of access and care:
1. Make genetic testing easier and more affordable.
A large part of our access and care discussion focused on access to genetic testing services. Currently there are financial, insurance, cultural and other barriers that result in patients not receiving genetic counseling and genetic testing. Access to these services can be life saving in terms of personalized treatment options and especially in the realm of prevention. Therefore making the patient the center of access and care requires enhanced access to genetic counseling and genetic testing. Testing for germ line genetic mutations that increase cancer risk for other family members so that information can be shared and screening and prevention can be undertaken to reduce risk and incidence of cancer is a priority. Genomic testing of tumors and tumor profiling through liquid biopsies to enhance personalized medicine and effective targeted treatments is also a priority.
Many barriers to effective use of genetic testing exist: the lack of trained genetic specialists; barriers set by insurance companies to cover the cost of genetic testing; and “one time only” coverage for genetic testing, which means if the “wrong” genetic test is ordered the patient is then barred from further testing that might be informative and potentially life saving. We briefly addressed but did not resolve the controversy about whether a patient should be required to get the results of genetic testing from a genetic counselor or if a physician can provide the test results in a responsible manner.
Issues related to whether family testing should include panel testing or just the specific mutation already discovered in a family need to be addressed and resolved. Examples given included a family member who had panel testing in the presence of a known BRCA mutation and learned that the another BRCA mutation had been inherited from the other parent that had been heretofore unknown.
2. Expand access to qualified genetic counselors.
A patient centered approach requires adequate resources for patient education about genetic testing to ensure the right genetic tests are ordered and to provide guidance and psychosocial support for patients. Key to our discussion and recommendation on this topic is the fact that there are often long wait times to see a genetic counselor. Other barriers to access include cost, which may not be covered by insurance, and too few genetic counselors, especially in non-urban areas of the country.
Our group strongly believed that public policy incentives need to be put in place to encourage students to go into genetic counseling, especially cancer genetic counseling. As increasing numbers of genes are linked to inherited forms of cancer the need for qualified genetic counseling becomes more acute. Genetic counselors trained in prenatal genetics are not adequately qualified to do cancer genetic counseling and testing. Improved training of physicians to provide test results could be valuable as testing becomes more accessible.
3. The CDC and other public health organizations should facilitate genetic testing and access to patient centered educational resources.
4. Ensure that patients who have been diagnosed with an inherited genetic mutation increasing risk of cancer, such as a BRCA mutation, Lynch Syndrome mutation, etc. have access to ALL standard of care preventive services and screening services.
The key to reducing cancer incidence and mortality in inherited cancer is early detection and, to the extent available, prevention. Currently some insurers do not cover standard of care screening services, such as breast MRI for patients with known BRCA mutations. This is exactly the opposite of a patient centered approach designed to reduce incidence and mortality of cancer. Cancers not detected early are more difficult to treat and cure. Moreover women denied access to what is known to be the best standard of care are subjected to immense psychosocial stress and harm.
5. Reduce fragmented care by creating an integrated genetic testing/screening/treatment pathway.
Patients felt that there was no “general manager” of their care. Patients also described being shuffled between specialists who only viewed one piece of a treatment plan without a view of the whole treatment plan. Patients felt unqualified to be the person managing all of these specialists but felt that nobody was actually keeping an eye on the big picture. From a patient centered point of view, this is an enormous gap. Cancer is a complex disease affecting many systems in the body but the current cancer care system does not incentivize anyone to take responsibility for overseeing a patient’s care. Part of the cause here is systemic and needs a public health solution while part of the issue is that cancer is such a complex disease.
Disparities in Cancer care:
1. Public – private partnerships need to be forged to expand education and outreach to underserved communities and assure that the needs of these patients are met, including appropriate genetic testing.
Low income and minority communities face substantial disparities in terms of cancer treatment. Recent studies also show disparities in terms of testing for inherited genetic mutations such as BRCA. The barriers are both financial and cultural and will require a multi-pronged approach to resolve. Recent studies show that African American women are far less likely to be offered genetic testing for genes that increase cancer risk and/or genes that may affect treatment decisions.
Incentivizing breakthrough research discoveries in Cancer:
1. Cancer prevention research should become a national priority under the Cancer Moonshot.
As mentioned by the Vice President in his remarks, “Prevention can save more lives than anything else we can do.” Accordingly, this was the top issue from our summit.
2. Incentivizing and creating breakthrough discoveries for cancer prevention by focusing on inherited cancers.
The key reason treatment has remained the predominant paradigm for cancer is that until now, we did not know who would likely develop cancer. This impaired our ability to develop targets for prevention and research. The exception has been the development of the vaccine Gardisil for HPV, which prevents cervical cancer. Once we knew the target – the virus – vaccine development followed.
By the time a tumor is large enough to be seen on current imaging technology it is driven by thousands of genetic changes. This complexity may make it impossible to know what drove the cells to cascade into cancer. But with inherited cancers the paradigm is now shifting. Genetic testing for genetic mutations that cause cancer means we now DO know who will develop cancer. We know, for example, that a carrier of the BRCA mutation has up to a 90% likelihood of developing breast, ovarian, pancreatic and/or prostate cancer as well as melanoma. This highly at risk population is the gateway to finding cancer prevention overall because now we DO know who is likely to develop cancer. We DO know whom to study. And we DO have a target for developing not only targeted therapies but also targeted preventive therapies.
3. Creating breakthroughs in prevention research will require interdisciplinary team based science, public/private partnerships and innovation from new and existing entities and partnerships.
Good ideas can come from anywhere and high risk / high reward ideas should garner the investment of intellectual and physical capital.
4. Vaccine research for prevention should be a priority.
We discussed the Gardisil and the annual flu shot as being prevention paradigms that are “patient centered.” Additionally, vaccines offer the greatest opportunity to be accepted by patients and be affordable. Feedback from inherited cancer families is that anything short of surgery – whether a vaccine, pill or something else – will be acceptable for preventing cancer because in these families the likelihood of cancer is almost certain. One father spoke very passionately about the dramatic steps his wife had to take to prevent cancer (mastectomies), the impact on their lives and the fear he has for his young daughters.
5. Research into inherited cancers can be enhanced by reducing barriers to genetic testing.
Currently there are financial, insurance, cultural and other barriers that result in families not receiving genetic counseling and genetic testing. Patients with known inherited mutations need to be identified; not only to protect their own health now, but also because healthy carriers of mutations are needed to provide liquid biopsies and tissue samples for early detection and prevention research. It is only by studying these patients, who are most likely to develop cancer, that prevention strategies will emerge. Reducing barriers to genetic testing will not only save lives now, it will provide the research participants necessary for breakthrough research.
The HeritX organized satellite summit was attended by patients and families with inherited cancers and known BRCA mutations, advocates and a handful of healthcare workers. Specifically, our summit included 50% cancer survivors (breast cancer, ovarian cancer, melanoma stage 4, and other skin cancers), 3 spouses of cancer patients, 2 patient advocates, 3 healthcare workers. 85% (all but 3) were from families with known BRCA mutations. These included BRCA carriers who had not been diagnosed with cancer but who had proceeded with preventive mastectomies and/or preventive oophorectomies to prevent cancer.