Friday, July 23, 2010

Expanding our reach through collaboration

In the 2009 Vision Survey of NSGC members, respondents rated billing and reimbursement efforts as the top strategic initiative the NSGC should pursue over the next 3-5 years. On federal and state levels, progress is clear with 13 states having passed licensure legislation and many more preparing to introduce bills. We are actively seeking a congressional sponsor to introduce federal legislation to amend the Social Security Act to recognize genetic counselors as providers under Medicare. However, efforts with private payers have been initiated mostly by individual NSGC members, so the time has come to organize a strategic effort to approach private payers to cover genetic counselors’ services.

In our preliminary talks with payers we have encountered two repeated concerns from their leadership, 1. there is limited formal data to demonstrate the importance of covering genetic counselors’ services, and 2. not all of their health plan’s members will have access to a genetic counselor. As a not-for-profit professional association, we have finite resources to address these challenges.

One way to expand our organization’s resources is through strategic partnerships, and there is an organization that has experience and assets in working with payers. In June, The NSGC Board approved a collaboration with Informed Medical Decisions (IMD), which is a for-profit company that offers telephone-based genetic counseling by ABGC-certified genetic counselors. IMD has already had success in writing contracts and policies for third-party payers to cover and, in for some tests, require pre-test genetic counseling prior to authorizing genetic testing.

The NSGC Payer Task Force will lead an effort on the NSGC side to approach third-party payers with IMD to write coverage policies to cover genetic counseling. IMD has agreed to share lessons learned from its own negotiations with payers as well as outcomes data on genetic counseling patients that payers will want to see. They also provide a solution to the concern payers express about access to genetic counselors in areas where face-to-face counseling may not be available.

We recognize that many members will have concerns that payers will favor telephone counseling over face-to-face counseling. Therefore, one important point to emphasize is that the NSGC and IMD will approach payers to cover genetic counseling provided by Certified Genetic Counselors. IMD policy does not advocate for telephone-only access to genetic counseling and does provide referral to local genetic counselors when positive results or family situations indicate that an in-person visit is optimal. There will be no favoring of telephone over phone counseling and we will provide guidance to payers regarding counseling scenarios where telephone counseling is inappropriate. In fact, for many payers, phone services are more expensive and easier to game than face-to-face services, so they do not have an inherent incentive to favor telephone services. In addition, once genetic counseling is a covered service, it opens the door for coverage in a variety of service delivery models, so we expect the demand for genetic counseling services overall to grow.

The collaboration with IMD is non-exclusive, so others parties could join us if we deem it beneficial to the NSGC, and we will perform regular evaluations of the NSGC/IMD effort to assess whether the NSGC is achieving tangible, beneficial outcomes for its members. No money is changing hands as part of this collaboration, and the NSGC is under no obligation to continue the effort if the objectives established at the beginning are corrupted in any way.

The NSGC leadership recognizes that this is a big change for the NSGC. While we regularly accept sponsorship dollars for companies’ advertising and exhibits, this is the first time we will work with a for-profit company with the goal of achieving a specific strategic objective. We know that there is risk in lending our credibility to another organization and have put the appropriate controls and people in place to monitor progress and ensure our goals are being achieved. We believe fundamentally that we need to band together as genetic counselors to demonstrate that we bring critical value to patients and providers. NSGC’s collaboration with an organization that is, after all, a provider organization of genetic counselors with no financial ties to other genetic services such as testing, will help us achieve our goal of promoting the role of genetic counselors as quickly and effectively as possible.

Wednesday, July 7, 2010

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.”