Headlines — Project Hope, Blind Justice & Down Syndrome

Circa 2005



Los Angeles psychologist Geoffry White, PhD, has spent much of his career helping people fight psychological stress and mental illness. Now he is helping women on the opposite side of the globe preserve their physical health as well. White is fighting one of the world’s biggest medical killers by organizing a program that trains non-physician health care workers to perform cervical cancer screenings using basic household vinegar.

White’s involvement in international health was first motivated by the atrocities in Bosnia during the 1990s. A trauma specialist, he traveled to the war-torn country to teach local professionals about war-trauma treatment, and he returned with a greater awareness about global health.

From other doctors involved in global medicine, White heard of the worldwide cervical cancer epidemic as well as the effectiveness of vinegar screening for parts of the world where cytological screening (Pap smear testing) is not available. In 1997, White approached the international medical humanitarian organization Project Hope to help him launch a screening and treatment program in the African country of Malawi.

Cervical cancer, while easily detected with screening and highly treatable if caught early, kills roughly 200,000 women each year. It was the leading cause of cancer death in U.S. women until the Pap test was developed in the 1950s, and it is still the most common cancer in African women. While cervical cancer is responsible for nearly 80 percent of cancer cases in Malawi, in the past only 15 percent of Malawian women have received treatment in the early stages when therapies are effective.

So far, about one in ten women screened in the Malawi project have tested positive for the cervical changes that are the precursor to cervical cancer. These women have the abnormal cells removed with cryotherapy.

White remarks that the project has been an important demonstration of the need for community ownership of any program and the inclusion of local power brokers. “In Malawi we needed to work closely with the men (the village elders, husbands, etc.) to get their support and permission. We involved them in such a way that they felt the program was theirs, not something imposed upon the community.”

A grant from the British government facilitated development and implementation of the demonstration project in Malawi. White and Project Hope are now seeking funds to replicate the program throughout Africa and in many other underserved countries across the globe.

To make a donation to the cervical cancer project, contact Project HOPE at 800.544.HOPE, mail donations to 255 Carter Hall Lane, Millwood, VA 22646 or contact Geoffry White at GeoffryW@aol.com

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Technology leader GW Micro has joined with Bochco Media and We See TV, a company providing recorded audio descriptions for visual media (video description service), to sponsor description support for the ABC television drama Blind Justice. In the series, actor Ron Eldard plays NYPD detective Jim Dunbar, who becomes blind after he is shot on the job. A year after his injury, Dunbar is reinstated and working cases while battling expectations from his colleagues, his wife and himself.

Blind Justice is the first ABC series to offer video description service. An additional audio channel plays narration describing what is being shown on television, allowing a person who is blind or visually impaired to hear descriptions of actions and images that cannot be discerned by listening to the dialog and sound effects alone.

“We think television is for everybody, and we think We See TV is visionary in their efforts to make it accessible to everyone. We’re glad to be able to help with that in any way we can,” said Erik Deckers, director of sales and marketing for GW Micro, which produces the Window-Eyes screen reader. This software product reads all available information on a computer screen, enabling computer users who are blind to function in workplace and educational settings.

Blind Justice explores society’s tendency to pigeonhole people before even meeting them. It details the struggles Dunbar faces as he strives to overcome the prejudice associated with disability, but tries to avoid the temptation to stereotype him or make him a hero without the flaws, doubts and imperfections of humanity.

We See TV says it will attempt to achieve the perfect balance of description versus the program’s original audio, but also realizes that many in the audience may want more details. To that end, the company offers enhanced descriptions of sets, characters and other pertinent information on its website. All visitors to the We See TV website will also be encouraged to participate in an online survey to help We See TV and GW Micro understand viewers’ thoughts about video description in general and Blind Justice in particular.

As with many major television series, Blind Justice provides closed captioning service to help make the show accessible to viewers who are deaf or hard of hearing.

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survey of mothers published in a recent issue of the medical journal Pediatrics found that physicians remain overwhelmingly negative when communicating to families the diagnosis of Down syndrome in their newborn infants. Mothers reported that the majority of physicians were uninformed about the positive potential for children with Down syndrome and rarely provided adequate, up-to-date information. They also stated they rarely received printed information or telephone numbers of other parents. Across nearly all aspects of the interaction, from the explanation of Down syndrome to the timing and setting of the news to the language used, physicians fell short of making the birth a positive experience.

The study’s author, Brian Skotko, a student at Harvard Medical School and Harvard’s John F. Kennedy School of Government, mailed an 11-page survey to nearly 3,000 members of five Down syndrome parent organizations across the U.S. Of the 1,250 responses he received, nearly 1,000 were from mothers who had not undergone prenatal testing and received the Down syndrome diagnosis after delivery.

Mothers were frequently advised to put their children up for adoption or were chided for not having prenatal testing, the survey found. Some mothers even said they received the news while having episiotomies stitched up. While the worst reported instances came from the 1980s and earlier, mothers still described insensitive comments as recently as the late 1990s and early 2000s.

“Doctors have gotten better over time, but it’s been a very slow change, and they’ve really gone from terrible to just bad,” says Skotko, who has a sister with Down syndrome and co-authored the book Common Threads: Celebrating Life with Down Syndrome. “Finding out a diagnosis of Down syndrome does not have to be a horrible process. In fact, the mothers in this study explain how physicians can make it a positive experience. We hope this paper will be a catalyst for increased dialogue among doctors.”

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Based on the mothers’ comments, Skotko offers a 10- point prescription for communicating a diagnosis of Down syndrome:

1. The person to communicate the Down syndrome diagnosis should be a physician.

 2. Obstetricians, neonatologists and pediatricians should coordinate their messages.

3. The diagnosis should be delivered as soon as a physician suspects the diagnosis, but only after the mother is settled.

4. Parents should receive the news together, in a private setting.

5. The physician should first congratulate the parents on the birth of their child and not forget to talk about the positive aspects of Down syndrome, and should not begin the conversation by saying, “I’m sorry.”

6. Health care professionals should keep their personal opinions to themselves.

7. Mothers should be provided with up-to-date printed materials, which at a minimum should include a bibliography listing the most current resources for new parents.

8. Parents should be put in touch with other families who have children with Down syndrome.

9. After the diagnosis or suspicion is shared, parents should be offered a private hospital room.

10. All physicians should educate themselves about the educational and social potentials of children with Down syndrome.

Approximately one of every 1,000 children in the U.S. is born with Down syndrome, meaning that approximately 5,000 sets of parents receive the diagnosis for a child each year. Despite the widespread use of prenatal testing, the majority of families who have a child with Down syndrome do not learn of the diagnosis until after the child is born.

National Down Syndrome Congress, 800.232.NDSC, ndsccenter.org

National Down Syndrome Society, 800.221.4602, ndss.org

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