If we build it, they will come

We’ve all heard it. The media, policy-makers, industry and even other medical professionals have all said that there aren’t enough genetic counselors. Is it true? Are the approximately 3,000 certified genetic counselors in the US insufficient for the current demand? Is the growth rate of the profession sufficient to support future demands?

My first response to this statement is to recognize that there’s good news hidden in this frustrating sound bite. The underlying assumption by all who perpetuate it is that genetic counselors are the right professional to help patients and providers decipher the complex world of genetic disease, predisposition, and testing. As genetic counselors, we should recognize this as a victory, as I’m quite sure some of the veterans of our field would remind us that was not always the case.

But let’s not rest there. Looking into the data, the NSGC membership has grown by over 30% over the last six years. We project that the number of genetic counselors will increase by at least 33% over the next five years. Is that enough to meet the demand for our services?

My own career is rooted in prenatal genetic counseling, so I turn to the relationship between OB/GYNs and genetic counselors for inspiration. The frequent phone calls with my referring physician base about which patients were appropriate for referral and which could be handled well within their own practice (or at least until further risk assessment was performed) gives me hope for a collaborative relationship with physicians across all specialties. A January 2006 paper published in Obstetrics & Gynecology on Down syndrome screening reported that only 2% of the 532 OB/GYNs surveyed did not have access to formal genetic counseling services. Given that genetic risk assessment is well integrated into obstetric care and the majority of the over 2,000 genetic tests currently available have applications to the prenatal setting, I would hardly call this a crisis.

So perhaps most people speaking about the “shortage” of genetic counselors are speaking about the future. GeneTests reports that the number of genetic tests listed on its site (which I recognize is not exhaustive) has grown by over 60% in the last 5 years compared with our 30%. Acknowledging that not all genetic tests available have proven value and that the number of genetic tests is only one metric to consider in estimating the demand for genetic counseling services, it is still reasonable to conclude that the profession needs to grow to meet the demand.
The NSGC has plans to address the core issues that have the potential to limit our growth. Obviously, patients and providers need to be confident that if they want to utilize a genetic counselor’s services, the service will be accessible and affordable. The NSGC has multiple initiatives underway to address these potential barriers.

The NSGC has a three-pronged strategy for addressing access issues including federal, state, and third-party payer efforts. The NSGC hopes to introduce a bill this year to Congress to update Medicare regulations to recognize genetic counselors as providers; the language is already written and our Executive Office team is seeking a sponsor. Since many third-party payers follow the Center for Medicare and Medicaid Services’ (CMS) policies, passing a federal bill would not only improve access by Medicare beneficiaries to genetic counselors but other patients will likely have improved access as well. State licensure efforts are in full swing. Delaware’s governor signed genetic counselor licensure into law on July 30, making it the thirteenth state to pass a licensure bill. Six additional states have introduced bills, California has moved forward with a technical amendment to its legislation to address the hold-up in writing regulations, and many more are organizing to introduce bills soon.

The remaining “prong” of the strategy has been constrained by resources and the diversity of the payers themselves. However, success with third-party payers has very tangible benefits for genetic counselors, so the NSGC is putting the tools in place this year to launch a payer initiative next year.

The call to action is coming soon! We will need grass roots efforts for both the federal and third-party payer efforts. Success will require more than the efforts of the NSGC leadership and staff alone. The NSGC’s Pubic Policy Committee and Access and Service Delivery Committee are leading the charge, and there will be further discussion at the AEC in Dallas this fall.

Thinking about all the efforts under way to increase access, I am reminded of one of my favorite movies Field of Dreams and the mysterious voice that inspired Kevin Costner to plow his corn field to build a baseball diamond without knowing the outcome. In that spirit and with steadfast belief that these efforts will bring genetic counseling services to more patients than ever, I say to you: “If we build it, they will come.”