As World AIDS Day turns 35, the mother of an Indiana teen who became the public face of the disease is a reminder of the importance of never forgetting the hard work of medical researchers and the victims lost in the frenzy to find a cure.
More than 40 million people have died from AIDS, including Ryan White, who grew up in central Indiana at a time when not much was known about it and medicine offered few treatments. Ryan contracted the disease during a blood transfusion at age 13. He became a staunch advocate against discrimination and helped change how Americans view AIDS.
Jeanne White-Ginder, who eventually left Indiana for Florida, said it is imperative to remember all the lost lives.
"That is so important that we remember all the people who got us to where we are today, because they are no longer here," White-Ginder noted. "And I'm not just talking about Ryan, because Ryan was a face, but there are so many people that did all the work."
Just five weeks after Ryan's death in 1990, Congress overwhelmingly passed the Ryan White CARE Act with bipartisan support. The legislation helps more people get tested for HIV and offers assistance to patients in all stages of the disease.
Ryan's mom emphasized AIDS affects people across the spectrum, regardless of labels.
"A gay person has it, a straight person has it, a blood transfusion person has it; it was for everybody," White-Ginder explained. "Once you have AIDS, you're just like everybody else who has AIDS; you're fighting to stay alive. And people fought to stay alive, and people dedicated their lives to get us to where we are today."
She added Ryan would have turned 52 next week.
His mom plans to travel to Indiana University on his birthday, where the Rural Center for AIDS/STD Prevention will present the Ryan White Distinguished Leadership Award to Dr. Joe and Sarah Ellen Mamlin.
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A Chicago mom who lost her son to cancer in 2022 is using the occasion of Mother's Day to call on Illinois lawmakers to pass medical aid-in-dying legislation.
Suzy Flack's 34-year-old son Andrew was a special-education teacher and avid hockey player living in California when he learned his cancer was terminal. Rather than return to his home state, he stayed in California, where medical aid-in-dying is legal.
Now, with such legislation under consideration by Illinois lawmakers, Suzy Flack is using social media to urge its passage.
"Like I said in the video, I didn't realize how horrific cancer was," she said. "So, I would really like to stress that that comfort level that he had because he had the control over his death."
The legislation would allow mentally capable, terminally ill adults with six months or less to live the option to request a prescription for medication they could use to end their life.
According to a 2023 survey by the group Compassion & Choices, more than 70% of Illinois residents support such a law, while 17% would oppose it.
With no legal way to end his life in his home state, Flack said her son was unwilling to leave California because he wanted a peaceful death.
"That option of having the medication was strong enough to keep him there, despite missing his family," she said, "and certainly, it would have been easier for all of us if he had been back in Illinois."
In addition to California, medical aid-in-dying is authorized in ten other states and Washington, D.C., while two additional states - Wisconsin and Massachusetts - are considering legalization. The Chicago-based American Medical Association has not endorsed the legislation.
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It's National Nurses Week, and educators and healthcare officials say there just aren't enough of them to go around. A combination of retiring baby boomers and nurses who chose to leave the field after the pandemic has left a projected shortfall of more than 5,400 nurses in Nebraska's hospitals, clinics and long-term care facilities.
Linda Hardy, Nebraska Nurses Association president, explained that the system is not training enough new nurses to fill the vacancies.
"I think across the country we have a nursing shortage," she intoned. "But the other thing we have a shortage of are nurse educators - and also, clinical sites for student nurses to be able to practice their clinical skills."
According to a Nebraska Health Care Workforce Collaborative report, 66 of the state's 93 counties have been declared medically underserved, and nine have no nurses. The report points to degraded "emotional health and well-being" as the main reason for staff shortages.
Hardy added healthcare providers and state officials are studying how to increase the investment in educational facilities and clinical sites to train new healthcare workers, and said one goal is to recruit them when they are young.
"There's a collaborative effort to try and get more healthcare workers, not just nurses but radiology techs, pharmacists, etcetera, into the pipeline from high school kids. So, that's a good thing," she insisted.
Carole Johnson, administrator of the Health Resources and Services Administration, said her mission during National Nurses Week is to highlight the vital role nurses play on the front lines, providing care, comfort and support to patients every day, but added the best way to honor them is to support them from training through retirement.
"You have to be investing in the nursing workforce. And so we're providing scholarships, loan repayment, stipends, upskilling - a whole host of training initiatives to really help ensure that we can recruit people into nursing and that when they're there, that they stay," she continued.
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Birth doulas assist new moms with the stress, uncertainty and anxiety of childbirth, while another type of doula offers similar support to those who are dying.
Death doulas, or end-of-life specialists, give spiritual and emotional support to people nearing death in a nonmedical setting. The word 'doula' comes from the Greek word 'doule,' meaning 'female helper.'
Kim Burgess, end-of-life doula and board certified adult geriatric nurse practitioner for Comforting Transitions, an elder care facility in O'Fallon, said fulfilling a dying person's wish to be in their desired setting is important.
"When I was in the home, primarily geriatric population, people wanted to stay in their home; the comfort of their home, their own surrounding, their own food, their own loved ones," Burgess explained. "I loved to being able to support people in that role."
Training to become an end-of-life doula happens in workshops, with required reading and work-study assignments. Since it is not a federally recognized field, insurance companies do not cover the services. The Illinois Department of Public Health said in 2022, Cook County alone saw nearly 46,000 deaths. Almost 20,000 were between ages 65 and 84.
Death, or what is sometimes called "the other side," can produce feelings of fear, or a sense of denial, especially if a terminal condition has been diagnosed. Burgess observed it is a 24-hour job for loved ones helping someone in their final days or weeks. She has encountered families who are unprepared for the caregiving needs.
"A lot of times, their family is saying, 'We're just overwhelmed, and we have hospice involved, but we still feel like we need some more support,'" Burgess recounted. "An end-of-life doula can be there, giving the family reassurance or making some slight suggestions on how to comfort their loved one."
Doulas can also help plan an advance directive, instructions a person can leave behind about their funeral service or cremation, what to do with a pet or help writing a loving message to family and friends.
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