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Health Care Providers Can Help Accelerate Hereditary Cancer Research

March 3, 2014
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1 in 500 people (0.2% of the population) carries a BRCA mutation, yet we constitute about 10% of people with breast or ovarian cancer. The HBOC community shoulders a disproportionate cancer burden.

Why HBOC research is important
Hereditary cancers constitute a small subset of a larger disease state. About 7% of breast cancers and 18% of ovarian cancers are due to a BRCA mutation. The HBOC community shoulders a disproportionate cancer burden, facing lifetime cancer risks that are higher than any other known population. Our cancers tend to be younger onset and more aggressive, we are at risk for second and third primary cancer diagnoses, and our risk can be passed on to our children and shared with relatives. We are a subset of the larger cancer community, yet our cancers develop differently, more quickly, and may respond differently to treatments than sporadic cancers.

After years of advocacy, HBOC research is getting some well-deserved attention. But to continue this progress, we need to ensure that these studies enroll adequate numbers of patients. A previous blog touched on the complex, multifaceted challenges to HBOC research recruitment and the shared responsibility of all stakeholders to overcome these barriers. This blog focuses on specific barriers to HBOC research and the integral role health care professionals can play in overcoming these barriers to accelerate progress in preventing and treating hereditary cancers. 

Health care providers as partners in research recruitment
Patients trust and rely on their medical teams to provide the best care specific to their individual situations. Research shows that physicians play a key role in educating patients about research studies. Yet, the same studies also show that physicians do not always inform patients about clinical trials elsewhere due to institutional barriers and personal biases. For this reason we are asking health care providers to join FORCE in our campaign to promote awareness and participation in research among the HBOC community.  We ask that oncology health care providers consider the following for all their patients:

  • Refer patients who meet NCCN criteria for genetic evaluation as soon as possible after diagnosis.
  • Discuss the availability of clinical trials with newly diagnosed or newly relapsed patients.
  • Consider which clinical trial, including those outside the health care provider’s facility or practice, that might be the best match for a patient,
  • Inform patients if a particular treatment might impact their eligibility for a clinical trial. 
  • Refer patients to FORCE as a resource and to assist with clinical trial matching.

HBOC specific research studies
HBOC cancers develop due to the presence of a germ-line mutation in one of the BRCA genes. Scientists are researching how to exploit these deficits to better prevent or treat hereditary cancers. For example, PARP inhibitors, first studied in 2005, attack the weaknesses of BRCA-related cancer cells in repairing DNA damage. Despite promising results, delays and roadblocks have delayed the path to FDA approval; more than eight years later, we still have no FDA-approved PARP inhibitors, and people are still dying of hereditary cancers. Research of PARP inhibitors is finally progressing, with more HBOC-specific open studies urgently pursuing patient enrollment.  Failure to completely accrue these studies could derail future HBOC research by creating the perception that the HBOC community is not motivated to participate in research, and that as a cohort, we are too difficult to recruit. Health care providers can play a powerful role in surmounting enrollment obstacles by simply informing their patients about clinical trials.

Challenge: Competing clinical trials and matching patients
HBOC-specific clinical trials compete with each other for participants, and compete with larger, more numerous studies that are not limited to people with mutations. For example, a recent search of clinicaltrials.gov for U.S. treatment trials enrolling people with metastatic, BRCA-associated breast cancer returned 11 studies. A similar search for all metastatic breast cancer studies returned over 200 clinical trials with broader recruitment criteria. Of 60 advanced ovarian cancer treatment studies listed, just eight were specifically for patients with BRCA mutations. The implications are concerning for the HBOC community: a mutation carrier with advanced breast or ovarian cancer has a higher likelihood of finding and enrolling in a less-specific clinical trial than one of the few studies open to someone with their specific cancer and mutation type. 

Solution: Maintain awareness of HBOC clinical trials and refer appropriate patients to studies, even those at other institutions
We encourage all health care providers who work in oncology to stay updated on clinical trials that are recruiting HBOC patients. FORCE provides two helpful tools to do so: our Health Care Provider electronic updates (sign up here and choose the “Updates for Health Care Providers” option), and our online list of HBOC research.  Next month we will be launching an HBOC-specific clinical trials searchable database to better match patients to relevant clinical trials.

If your institution or practice has HBOC-related research that you would like to have included in our database, please send an overview and contact information for the study to Lisa Rezende at lisar@facingourrisk.org.

Challenge: Clinical trials are seen as a “last resort” and certain treatments may impact eligibility for studies
An erroneous perception exists that clinical trials are a “last resort” for treating patients who have progressed after several different therapies. Many patients report that they have been discouraged from participating in a trial because they haven’t exhausted all their treatment options yet. Additionally, in addition to studies for  those with advanced cancer, there are clinical trials enrolling HBOC patients for cancer prevention, earlier-stage disease, and maintenance therapy for patients who have completed treatment.

Further, certain treatments may affect a patient’s eligibility for some clinical trials. For example, newly-diagnosed breast cancer patients who undergo lumpectomy or mastectomy become ineligible for neo-adjuvant chemotherapy studies. Receiving a certain chemotherapy or a certain number of prior treatments may render patients ineligible for some PARP inhibitor studies.

Solution: Discuss clinical trials before beginning treatment
Because patients who do not receive the most up-to-date and comprehensive information about clinical trial options are less likely to make informed decisions about their care, health care providers should consider notifying patients about clinical trial options before starting treatment or resuming treatment after a recurrence. We encourage health care providers to inform hereditary cancer patients sooner rather than later about the existence of HBOC-specific research, even those at separate or competing facilities. Health care providers and patients can find relevant research studies listed on the FORCE website.

Challenge: Underutilized genetic testing
Research has shown that genetic counseling and testing are underutilized services for those who meet national guidelines. Every woman diagnosed with breast cancer at age 50 or younger, and every woman diagnosed with ovarian cancer at any age meets national consensus guidelines for referral for genetic counseling. Despite these national guidelines, a recent study showed that 57% of women diagnosed with breast cancer at age 50 or younger did not receive genetics evaluation.

Solution: Refer all patients who meet national guidelines for genetic counseling and testing

Every breast cancer patient who has a family history or who was diagnosed at or before age 50, and every ovarian cancer patient meets NCCN guidelines for referral for genetic evaluation. Although BRCA test results may affect some breast cancer surgical decisions, impact risk for future cancers, and can inform a patient’s relatives of their risk for cancer, genetic counseling and testing of newly diagnosed breast and ovarian cancer patients often does not receive high priority. Treatment clinical trials that specifically recruit people with BRCA-associated cancers provide one more reason for health care providers to recommend genetic evaluation to newly diagnosed breast and ovarian cancer patients.

Solving the problem of hereditary cancer requires a maintained, concerted effort. We hope our health care provider partners will read, consider, and share this blog with colleagues and follow these steps to accelerating research.

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4 Comments

  1. Christine says:

    The only way this will work now is to educate patients through media and have a one place “shopping” for newly & recurrent Dx’d to see the Best Practices tx protocols, NCCN guidelines for gene testing, clinical trials, etc…in essence, we need to be prepared to do our own oncology work. 5+ year survivor, 1 recurrence, 3C ovarian cancer, BS-MCB, just finding out I’m BRCA1+ after a geneticist convinced me I couldn’t be BRCA 5 years ago; a Komen MCB volunteer/researcher convinced me I couldn’t be BRCA 3positive years ago. I demanded testing last fall thinking Lynch syndrome! My eldest sister, dx’d with bc in 1998, in recurrence now, is finally getting the right treatment—her docs screwed up—for 15 years. Had I known the paternal BRCA1 mutation was in my family, I would have had the hysterectomy in 1998, at 36.
    And we both had excellent doctors! The system is too slow to change. The people have to take control.

  2. […] uses her blog to advocate for research and treatment initiatives that support long-term health for women with the BRCA mutation, and […]

  3. […] medicine Following delays of PARP inhibitor research, FORCE mobilized HBOC stakeholders to educate and inform health care providers and consumers to strategically increase enrollment in critical HBOC targeted therapy clinical […]

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