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Meeting the Challenges to Hereditary Cancer Research

October 2, 2013

This week is National HBOC week and today is National Previvor Day; personally this season is marked by equal doses of reflection, recollection, gratitude, and action.

Much progress has been made in cancer research in the 15 years since I learned about my mutation and founded FORCE. Perhaps most exciting are the advances in “personalized medicine,” which looks at unique genetics traits of a subset of the general population to develop more tailored medical care. Personalized medicine research has given us new tools in the cancer fight, for example tumor tests like OncotypeDX, which looks at the unique biology of tumors to help predict which ones are most likely to recur and which patients would benefit most or least from additional treatment. New “targeted therapies” work by interacting with receptors and molecules found in certain cancer cells. They interfere with cell function causing the cancer cell to die. An example is Perjeta, which was just approved by the FDA to treat breast cancers that overexpress a marker called Her2neu.

Personalized medicine research has great potential for improving treatment, prevention and detection of hereditary cancers. HBOC cancers develop differently and behave differently than other cancers: they are younger-onset and more aggressive, there is a very high lifetime risk for one or more cancer diagnoses. And HBOC risk can be passed on to our children. Researchers are looking at the genes that make our cancers different to provide better ways to treat or prevent them. After years of advocacy, HBOC research is getting well-deserved attention. The observation by researchers that many hereditary ovarian cancers may actually develop in the fallopian tubes has led to the opening of a study looking at whether fallopian tube removal may be a safe and effective strategy for lowering risk in women with BRCA mutations who are not ready to remove their ovaries. Another notable example, PARP inhibitors are targeted drugs designed to treat cancers caused by BRCA mutations.

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FORCE featured research highlights studies of particular interest to the HBOC community.

Clinical trials such as the BROCADE Study and ARIEL Studies and others are looking at whether PARP inhibitors may work better than standard care for breast, ovarian and other cancers. We need these studies to be completed before these agents can be made widely available, but researchers report that study participants are still desperately needed.

Over the years our research surveys have shown that our community:

  • wants better, less invasive, more effective options for detecting, preventing and treating hereditary cancers.
  • understands that these options require clinical trial research in order to advance.
  • is very motivated and willing to participate in the studies that can benefit us now and in the future.

So what is delaying progress? I recently gave a presentation about the challenges of recruiting the HBOC community for clinical trials, which gave me the opportunity to explore and define some of the barriers to filling these studies.

  • There is still a limited awareness about HBOC. Many people who meet expert guidelines are not being referred for genetics evaluation and testing.
  • Many more cancer clinical trials are open to people regardless of mutation status than clinical trials specifically for people with mutations. For that reason, HBOC studies compete for patients with larger, more numerous, less specific research studies.
  • Health care providers are often unaware of HBOC-specific research studies at different institutions or hospitals, or are hesitant to refer patients to them.
  • Some clinical trials require patients to meet certain conditions, including limiting the type or number of prior treatments a patient can receive before enrolling. Patients who are not aware of clinical trial options before starting treatment or resuming treatment after a recurrence may be ineligible for study participation.
  • Many individuals’ interest in clinical trial participation is limited by their concerns about safety, medical care, use of placebos, cost, and their ability to withdraw from a study.
  • Finding open research studies, figuring out eligibility, and determining how to enroll can be challenging and time-consuming. Even websites that are created to simplify the process can be difficult to navigate.
  • Some studies require travel to another hospital, city, or state to participate, and require patients to consult with a new team of doctors, creating additional costs and time away from work and home.

Despite the challenges, these studies are essential and the investment in HBOC research is clearly worthwhile. The good news is that identifying these challenges can help us begin to address them and move the needle in favor of study enrollment and completion. FORCE is focusing efforts on overcoming these barriers. Below are some of the ways we are already tackling these issues. 

  • Raising public awareness about national expert guidelines on cancer risk assessment and genetic testing
  • Uniting and educating stakeholders to advocate for more resources and research specific to HBOC
  • Educating the community about the importance of participating in HBOC-specific research
  • Empowering patients to proactively seek out or ask their oncologist about clinical trials
  • Providing training to consumers affected by HBOC to participate in panels, research peer review and advisory boards to represent community perspective in setting research priorities and developing and conducting research studies
  • Informing people about new and promising targeted agents and HBOC-specific research opportunities
  • Working with researchers and industry partners to develop and distribute patient-friendly websites and materials that can be shared with the HBOC community
  • Educating health care providers about the challenges facing the HBOC community; our urgent need for new and better treatment, detection, and prevention options; and how they can help us with our efforts to improve HBOC research enrollment
  • Educating health care providers about open clinical trials enrolling people with HBOC
  • Educating policymakers and regulatory agencies about the challenges facing the HBOC community, and our need for expedited drug development, research, and approval

Over the next few months, I will be blogging in more depth about each of these barriers and strategies for addressing them. FORCE will be working to better assess the issues and create new programs so that we can make a positive impact on HBOC research participation. To learn more about how you can help advance HBOC research, visit the FORCE website for updates. To find research on cancer prevention, detection, treatment, quality-of-life and other studies visit the featured studies section and other studies section of our website or visit the clinicaltrials.gov website.

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4 Comments

  1. sur5r2 says:

    I knew from the moment I met Sue Friedman that her “baby”,FORCE, was destined to change the hereditary cancer world in many ways.
    I’m proud to have been involved with this dream and hope of yours that has grown and blossomed.I look forward to seeing what FORCE will accomplish in the years to come.
    Thank you Sue, for pursuing answers that have changed lives for the better.

    With greatest admiration,
    Marcia

  2. […] 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 […]

  3. […] is the key to better medical options. In prior blogs, I outlined some of the barriers to completing hereditary cancer research. This is the next blog in […]

  4. […] research, FORCE mobilized HBOC stakeholders to educate and inform health care providers and consumers to strategically increase enrollment in critical HBOC targeted therapy clinical trials. We continue […]

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