Natalie Davis sat with two women who she said were complaining about the way they recently had been treated.
Natalie Davis sat with two women who she said were complaining about the way they recently had been treated.
One said she had arrived at a health care facility and was met by people who were overly cautious toward her. The other recalled arriving for a hysterectomy only to find her surgeon hesitating to perform the procedure because she feared a needle prick.
The women are members of Let’s Talk About It, a group that is part of the Rural Women’s Health Project. And they all have something else in common: They are HIV-positive.
As a personal declaration of independence, the 12 active HIV-positive women in the group on Friday — the Fourth of July — released a free, downloadable brochure on the group’s website detailing their rights as a patient, the health care provider’s rights and their shared rights.
Called “My Rights & Responsibilities,” the simple, three-panel, two-sided brochure is the work of the women, doctors who treat infectious diseases and caregivers.
People in their circumstances do not always know that they are not just victims without a voice.
“I have the right to fire my doctor,” Davis said. “To go abroad if I feel as if I am not being treated right.“
The conversation Davis had with her fellow advocates motivated her to contribute to the effort.
“It just showed the stigma behind HIV,” Davis said.
She described the non-communication between doctors and patients regarding the disease as ignorance. The disease should not be something that prevents them from receiving health care.
“They are not treating the disease,” Davis, 34, said. “They are treating the patients.“
Robin Lewy, director of education for the RWHP, has worked with the women on the project. She said communication is key, and the brochure highlights that.
“Passive voice means poor outcome,” Lewy said. ”?’Rights & Responsibilities” is being able to voice what is your need, know what your right is and to be able to achieve your right with a better outcome.“
The providers who participated in the development of the brochure will be sharing it with their patients and reaching out to new providers in ways to support the positive community.
“Rights come with responsibilities,” Lewy said.
She explained that the women began to clearly articulate those responsibilities for themselves and their peers.
“Living with such a chronic illness, they now have a new tool to improve not only life in purpose of caregiving, but to make it easier for other women who might be sitting in a waiting room who may not know what they can do,” Lewy said.
By releasing the brochure to coincide with Independence Day, the community will be reminded that they are not alone and they have rights regarding health care.
“Our women want to live healthy and happy lives just like everybody else,” Lewy said. “They don’t want their disease to be what takes them down.”
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