A Short History of the
In late 1999, as the Y2K “crisis” was looming over the world and no one was quite sure what would happen on New Year’s Day, 2000, a group of United States Congressmen, led by Charles Rangel and Ed Towns of New York, Mike Oxley of Ohio, Mark Foley of Florida, and Donna Christian-Christensen of the United States Virgin Islands, created the Congressional Glaucoma Caucus – dedicated to helping all Americans prevent the scourge of glaucoma and other eye diseases. They were quickly joined by more than two dozen other members of Congress. Within a few months, in early 2000, a second organization was created, the Friends of the Congressional Glaucoma Caucus Foundation. The Foundation’s role was to be the active arm of the Caucus, going out into America to conduct screenings for high risk glaucoma population groups all across the nation. From the very beginning, the Foundation was an energetic and enthusiastic organization. Thanks to the wonderful work and energy of the Foundation’s distinguished Board of Directors, the Foundation’s physicians’ associates, technicians, and volunteers, in the period from April 2001 to August 2002, the Foundation was able to conduct 160 glaucoma screenings in more than a dozen states. 5,118 Americans had their eyes tested and 1,451 were referred to eye-care providers for a further work-up. Included in that group were 873 patients with specific indications for a more complete glaucoma exam. Many of these men and women might have lost their sight, but for the Foundation.
That was just the beginning, however. From April 2001 to October 2004, the Friends of the Congressional Glaucoma Caucus Foundation screened almost 36,213 individuals in 27 states, the District of Columbia, Puerto Rico, and the US Virgin Islands. FCGCF has held over 1,500 screenings nationwide. Of those screened, approximately one-third were referred for further vision related medical treatment: 15% displayed signs consistent with glaucoma and 18% showed signs of other vision problems. Early detection at screenings is so important, because for the vast majority of individuals with glaucoma, the chances of preserving their sight is significantly improved if diagnosed and treated early enough.
In the past year, our efforts are accelerating, and we have been showing more and more results. From September 1, 2003, until September 30, 2004, FCGCF conducted 925 screenings (nearly two-thirds of all screenings done since the Foundation was established), screening 19,876 persons at 492 screening sites. Of those, 2,783 men and women were referred to eye care specialists for glaucoma follow-ups; 3,608 were referred for ophthalmic follow-ups other than glaucoma; and 13,485 were considered routine. Females outnumbered males by almost 2-1 (12,765 women; 6,700 men). Hispanics numbered 9,578, making the largest demographic block screened. African Americans followed at 4,389 screened. There were 3,721 Caucasians screened; 484 Asians; and 415 listed as other.
Originally, the Foundation was supported by corporate grants from the private sector, but because of its success at screenings, the Foundation soon received very generous funding from several governmental agencies. For example, the Foundation received a grant from the Centers for Disease Control to conduct screenings in senior centers, shopping malls, office buildings, houses of worship and other venues across the nation. That grant was renewed in 2003 and again in 2004.
The District of Columbia also provided funding for the Foundation to conduct screenings in the city of Washington in 2002 and 2003. In 2004, a special grant was received to conduct screenings in the west Texas region, an area that has few medical centers and many people to serve.
A very important grant was awarded to the Friends of the Congressional Glaucoma Caucus Foundation in 2002-2003 from the Health and Human Services Department, and it enabled the Foundation to start a new venture: mobile screening. With funds received from HHS, the Foundation built and equipped a Mobile Eye Screening Unit (MESU1), to serve as an “ophthalmologist’s office on wheels.” With MESU1, the Foundation was able to reach out to people in places where there was no clinic or eye care professional’s office. The mobile unit has also proved its worth in urban settings, where the Foundation can bring screenings to the at-risk (often elderly) populations.
The mobile program has grown steadily. As 2004 draws toward a close, the Foundation has three MESUs on the road. Recently, MESU3 traveled across Dixie conducting screenings in the Delta country of Mississippi, the northern tier of Alabama, and throughout Georgia. During the month-long tour, the Foundation conducted 16 screenings, serving more than 700 participants. MESU3 passed through a dozen Congressional Districts on its tour. Glaucoma was suspected in 220 people screened, while another 169 were referred to an eye care professional for vision problems other than glaucoma.
Meanwhile, MESU1 was in the Washington, D.C. area, conducting dozens of screenings, and MESU2 was in the northeast, participating in screenings in Connecticut, New Jersey, and New York.
In the far west, two mobile eye screening programs are supported by the Friends of the Congressional Glaucoma Caucus Foundation. The Arizona Eye Care Collaborative has a van provided to them by the local Lions organization, and they have received a grant from the FCGCF to support the activities of that van. Further west, the University of California San Francisco Health Sciences Center was the recipient of the fourth MESU built by the Friends of the Congressional Glaucoma Caucus Foundation. This van was presented to UCSF for them to conduct a mobile program in the Bay Area. Up north, in Massachusetts, the Friends of the Congressional Glaucoma Caucus Foundation has supported the Harvard Medical School’s “Family Van” program.
In 2002, the Friends of the Congressional Glaucoma Caucus Foundation began actively promoting “Student Sight-Saver” programs at medical schools across the country. In these projects, supervised medical school students go out into the community to screen the population for glaucoma and other eye diseases, concentrating, naturally, on high-risk groups. The Friends of the Congressional Glaucoma Caucus Foundation created a video tape/CD to introduce medical students to screening for glaucoma, and the Foundation has provided the equipment and resources these groups need to conduct screenings. Each SSSP is also provided with a manual explaining the program, along with the equipment and a sizable cash stipend to enable the school to recruit volunteers and carry out screenings.
This is a special program with dual goals. First, the Foundation is able to utilize the enthusiasm and energy of the medical students to conduct hundreds of screenings. Second, the Foundation is exposing these future physicians to the science of ophthalmology at a time, when many of them are just starting to think of their eventual specialties. Thus the Friends of the Congressional Glaucoma Caucus Foundation is encouraging many talented men and women to make treating eye diseases their life’s work.
Active recruitment of other Medical schools is under way. The intent is to finalize agreements and expand this group rapidly.
The Foundation has learned many lessons from its screening efforts, which reconfirmed what many of the Foundation’s distinguished colleagues have capably stated: “Eye disease among minority populations and the elderly is a major US health problem and should be addressed as such.” Many of the people the Foundation has screened have no access to health care, no insurance, no doctors, etc. Their quality of life is severely compromised. The Foundation’s current grant program to Medical groups that receive funding includes an understanding that they will provide eye care to the individuals who are in need. Perhaps consideration should be given to a federally funded, eye-care program for the uninsured. The high incidence of glaucoma among Hispanics has led the Friends of the Congressional Glaucoma Caucus Foundation to request an addition to the language of the Medicare benefit covering glaucoma screenings. The Foundation is asking that Hispanics be defined as a high-risk population along with African Americans, diabetics, hypertensives, and those with a family history of glaucoma.
Perhaps no action of the Foundation showed its effectiveness and its vision as well as the inclusion of glaucoma screenings for at-risk populations under Medicare benefits. That was a two-year campaign that has now come to fruition for the nation’s elderly. Through the efforts of many CGC members, language was proposed to amend the Medicare Act so that glaucoma screenings would be included. This was approved by both houses in late 2000. On January 1, 2002, the benefit took effect.
Now millions of older Americans are able to access glaucoma screenings – but glaucoma does not strike only the elderly. The late great Ray Charles was blinded by glaucoma as a child. The fact is, glaucoma can blind anyone at any age. For this reason, the Friends of the Congressional Glaucoma Caucus Foundation has been in contact with HMOs, PPOs, and other health insurance entities around the nation to try to have glaucoma screenings included under ordinary policies. This effort will someday also bear fruit, it is hoped, but in the meantime, the Foundation will continue to sponsor free glaucoma screenings wherever possible.
The Friends of the Congressional Glaucoma Caucus Foundation and the Congressional Glaucoma Caucus itself serve as an excellent example of how a private group can work with governmental agencies to benefit everyone. There is no party squabbling when it comes to the health of Americans’ vision. The Foundation has combined the support of industry, local and national government, and the dedicated work of hundreds of physicians to create a program that investigates the best ways to protect everyone’s eyesight. All of the potential testing modalities already mentioned hold promise for the Friends of the Congressional Glaucoma Caucus Foundation. They are cost-effective, well-planned, and efficient means of testing large numbers of Americans in all corners of the nation. This is a collaborative effort that will continue to be successful.
The Foundation has been very successful thus far, and it plans to continue to expand nationwide. Programs in the Midwest and the northwest are planned to begin in 2005, and more and more people will come to understand the importance of our motto: “Don’t go untested!”
The Friends of the Congressional Glaucoma Caucus Foundation