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ADVOCACY
Prevent Blindness Indiana is developing a statewide vision coalition to help all Hoosiers enjoy sight for life. Working with elected and appointed officials, PBI encourages public policy supporting vision health and the funding to make services available to those who need them.
PBI’s Advocacy efforts take many forms:
Federal Legislation
As an affiliate of Prevent Blindness America, PBI participates in the annual Eyes on Capitol Hill project, when a delegation of PBI staff and Hoosiers affected by vision disorders talk with lawmakers in Washington to educate them about issues. Through Eyes on Capitol Hill, members of Indiana’s Congressional delegation and their legislative aides hear first-hand accounts from their constituents and learn how they can support the effort—for example, by joining the Congressional Vision Caucus.
State Legislation
Seeking to strengthen laws such as the requirement for vision screenings in schools, PBI has begun building relationships with legislative leaders in the Indiana House and Senate. By educating key committee members and caucus leaders, we hope to have a voice in the all-important debate over health care priorities, funding and other issues.
Advocacy Committee
Sue Hetherington, longtime vision advocate and former executive director of Prevent Blindness Indiana, chairs PBI’s Advocacy Committee. The committee is comprised of board members and other volunteers who work to support the policy aims of PBI. Several committee members are veterans of state and federal legislative work; others bring experience in strategic communications, health policy and corporate marketing. The Advocacy Committee advises on PBI’s legislative program, media relations and other outreach efforts.
PBI’s VISION ADVOCATES
The most persuasive stories are told by those who have been directly affected by the issues. PBI speaks through the experiences of a diverse and generous array of volunteer advocates who know first-hand the importance of vision health. PBI’s vision advocates tell their stories in the media, to groups through the PBI Speakers Bureau, and to elected officials.
Meet some of our advocates:
OLIVIA PIERCE: PBI’S YOUNGEST ADVOCATE
Olivia & Shannon Pierce shared their story at 2008's Eyes on Capitol Hill
Olivia was only eight weeks old when her mom, Shannon, realized something wasn’t quite right with her eyes. After Olivia’s pediatrician repeatedly told Shannon she had nothing to worry about, Shannon asked to be referred to a specialist.
There it was discovered that Olivia had bilateral retinoblastoma—a tumor behind the eye that could have spread to the brain if left undetected by her parents and untreated by an ophthalmologist.
When children are found to have it bilaterally, it is a genetic form of cancer. Olivia had to undergo eight cycles of chemotherapy, 14 exams under anesthesia and now has a prosthetic eye. At her exam in September 2007, it was determined she was far-sighted and needed to wear glasses, but more importantly there was no growth to her existing tumor and no new tumors.
Olivia is doing extremely well now, and her story is still a work in progress. She and her mom traveled to Washington, D.C. as part of PBA’s 2008 Eyes on Capitol Hill advocacy program.
MARY CONTRERAS JENSEN: IMPACT OF GLAUCOMA
Mary was diagnosed with bilateral glaucoma (both eyes) in 1985. This is a condition in which elevated intraocular pressures cause damage to the optic nerve, which is like a cable connecting the eye to the brain. The optic nerve is essential for transmitting to the brain the information that the eye sees, rather like a cable for a video camera. [more]
With glaucoma, the intraocular pressure compresses the end of the optic nerve that enters the eye. This initially causes loss of peripheral vision, but will also affect the central vision as the condition worsens.
Glaucoma is too familiar to Mary, whose mother and maternal grandmother both suffered from this debilitating disease. Impaired vision has presented Mary–like many others—with an array of challenges, both personal and professional. Mary is under professional care, though health insurance restrictions limit her options.
As a Latina, Mary feels strongly about advocating for vision issues on behalf of the Hispanic community. Like other minority groups, they suffer disproportionately from vision problems and have fewer resources available to them. Mary says, “The little things that persons with full vision take for granted can be nearly devastating to those who can’t see enough.” Mary wants to bring awareness to the strong possibilities of vision loss if glaucoma is not found and treated in its early stages. Loss of vision, sadly, equates to loss of independence.
DAN HENKEL: EYE CANCER DETECTED EARLY
Dan was used to being nearsighted, having worn glasses since age eight. He never figured, though, that he’d develop eye cancer. During a routine eye exam in 1995, an alert optometrist noticed a nevus—similar to a freckle—on his left retina. A specialist confirmed the diagnosis.
For twelve years, Dan returned for regular follow-up examinations and grew used to what he called “light shows”—streaming flashes of light caused by the tumor pressing on the retina. When the slow-growing nevus reached a certain size, it was considered a malignant choroidal melanoma. Dan received radiation plaque treatment in the form of a disk with tiny seeds of iodine125 placed behind the tumor and left in position for several days.
The radiation appears to have reversed the tumor’s growth, and the long-term prognosis is favorable. Dan now wrestles with reduced vision in the treated eye and may be subject to radiation retinopathy (similar to diabetic retinopathy). He has become a crusader for early detection and treatment, advocating on behalf of vision issues through PBI and Prevent Blindness America.
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