Increased Awareness Leads to Accelerated Research

About a million people in the United States carry a BRCA mutation; less than 10% of them are aware of their elevated cancer threat. Recent media coverage of Angelina Jolie’s BRCA status and risk-reducing double mastectomy has brought unprecedented attention to these issues. These reports will narrow the awareness gap while erasing stigmas that are associated with inherited mutations and mastectomy.

One topic that has not been highlighted, described or even discussed is what this publicity could do for hereditary cancer research and clinical trials. Despite all this attention, many people have been quick to point out that BRCA mutations are not common in the general population, and the majority of breast and ovarian cancers are not hereditary. Most cancer clinical trials focus on women with average risk or sporadic cancer; only a handful of research studies are specifically designed for people with BRCA mutations or other inherited cancer syndromes. Recruiting enough qualified research participants – especially for clinical studies that focus on smaller populations – is a critical research challenge. But it is a crucial priority, because clinical trials are required to advance medical care.

As an advocate, I have witnessed the difference that research can make for specific populations. Just 15 years ago, the outlook was bleak for women who developed aggressive breast cancers that overexpress the Her2neu protein. These cancers were known to be aggressive, with high rates of recurrence and mortality. But researchers recognized that some features of these tumors made them vulnerable to therapies that  targeted the Her2neu protein. This led to the development of a targeted therapy known as Herceptin, which received FDA approval in 1998 and revolutionized treatment for women with this type of breast cancer. Herceptin paved the way for development of several newer targeted drugs to treat these tumors. Today, many more women diagnosed with Her2neu positive breast tumors survive their cancer and never develop a recurrence. We can learn from the story of Herceptin (which has been chronicled in books and movies); the role that advocacy and awareness played in its development, and the challenges that had to be surmounted for eventual FDA approval of the life-saving drug.

That is precisely the type of focused effort (and results) we need for hereditary cancers, which tend to act more aggressively than other cancers, and to occur at a younger age. There are special features in the cancers of people with BRCA mutations that open up opportunities to develop new and better agents. Right now, we are teetering on the cusp of exciting research that could revolutionize treatment and prevention of hereditary cancers. PARP inhibitors, for example, are medications that were specifically designed to combat BRCA-associated cancers. Clinical trials are open and enrolling participants to determine if these agents improve survival in people with mutations. For example, the BROCADE Study is a large, phase II PARP inhibitor study enrolling people with advanced, BRCA-associated breast cancer. Large studies enrolling mutation carriers with ovarian cancer will be opening soon.

As PARP inhibitor research progresses, newer agents are also being studied to see if they may work particularly well for hereditary cancers. At the recent American Association of Cancer Research (AACR) meeting, results were presented on a combination of sapacitabine and seliciclib, two new drugs that may work particularly well for BRCA-associated cancers. Another new agent called PM01183 is in early clinical trials for people with advanced, BRCA-associated breast cancer. Might these new drugs hold the key to improved survival and better quality-of-life? Could PARP inhibitors or newer agents revolutionize treatment for hereditary cancers, and turn out to be our community’s Herceptin? These studies fill me with hope! But the only way to know is through clinical trial research, which requires recruiting a sufficient number of volunteers.

The most significant hurdle facing us is completing these research studies so that we can prove whether or not these new drugs work. Last year, a major study on hereditary ovarian and fallopian tube prevention and detection closed due in part to lack of participants. The study closure was a tragic loss for our community; and more so, could send an unfortunate and untrue message to researchers and funding agencies that the BRCA population is too small and too hard to recruit. While we continue to fight hard to get more hereditary cancer research funded, we must also devote resources to raising awareness and spreading the word about current research opportunities open to people with BRCA mutations or hereditary cancer.

One huge benefit of celebrities coming forward with their stories is that more people are motivated to learn about their inherited risk, and consider genetic counseling and testing. Our community will continue to grow as more people learn they carry an inherited mutation. FORCE will continue to lead the way; uniting all people facing hereditary cancer and providing support, education, and access to the latest research studies. Progress may feel slow and incremental, but an increasing attention to hereditary cancer may be just what we need to propel research and outcomes to the next level.

For more information on participating in hereditary cancer research, visit our website’s Clinical Trials and Research section. Over the next few weeks we will be updating the prevention, detection, and treatment studies section of our website, so stop back frequently. Our next Be Empowered webinar on PARP inhibitor research will be held June 27.

2 thoughts on “Increased Awareness Leads to Accelerated Research

  1. Some of us in the Force Seattle community attended a premiere of the film, Decoding Annie Parker, here in Seattle on June 6. Mary-Claire King, the geneticist who is in the film, met Anne Power, the real-life patient at the heart of the movie on stage for the first time in both their lives. Very moving.

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