The Centers for Disease Control and Prevention report the life-shortening blood disease sickle cell anemia affects about 100,000 Americans, mostly people of color.

And many individuals with the illness do not get the important screenings and treatments.

Sickle cell disease causes normally healthy, round, and flexible blood cells to become 'C' or sickle-shaped and stick to small blood-vessel walls.

This blockage prevents blood and oxygen flow to the arms, legs, and internal organs. Around 1,700 Hoosiers, mostly women of color, are impacted by the disorder.

Lisa Hoffman, grants and team manager with Innovative Hematology, said she would like to see better public awareness about the inherited disease.

"I would like to think it's not an issue about race, but 87% of the people in Indiana that have sickle cell are Black or African American," said Hoffman. "There are other diseases that affect predominantly white folks, and those diseases seem to get a bit more attention."

Patient education is essential for addressing sickle cell anemia complications. The blockages cause repeated episodes of severe pain, organ damage, infections, or sometimes a stroke.

Innovative Hematology indicates that 52% of sickle cell anemia patients in Indiana are female, and 48% are male.

One barrier to care is insufficient or no insurance coverage, which affects disease management. Another is a lack of medical providers with knowledge of detecting the illness. This can lead to a misdiagnosis or prescribing an ineffective treatment plan.

Hoffman said family members in dual roles as caregivers often do not get needed support. And other factors can present additional burdens for a patient.

"If you're a single mom and you have sickle cell disease and you are having a pain crisis and really should go to the hospital," said Hoffman, "you face a lot of barriers - such as, who's going to watch my child? How am I going to get there?"

The Indiana Statehouse hosted 174 attendees for Sickle Cell Advocacy Day last week, to raise the voices of those in the community who are affected by the painful disorder.

Hoffman said she wants legislators to extend health care services beyond age 21 for individuals with this specific condition.


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People who are part of the Deferred Action for Childhood Arrivals program, known as DACA, will be dropped from their CoveredCA health plans at the end of August.

The move comes after the Trump administration changed a Biden-era definition of "lawfully present" to revoke health care eligibility for thousands of immigrants.

Christine Smith, policy and legislative advocate for the nonprofit Health Access California, said people only have a few weeks to get medical appointments in before their coverage ends.

"If you're enrolled in Covered California and you're a DACA recipient, the Trump administration just ended your coverage," Smith emphasized. "People should use as much of your health care as you can before the August 31st deadline."

The Centers for Medicare and Medicaid Services defended the move, saying it will save taxpayers money. CoveredCA estimated the change affects about 2,400 DACA recipients in the state who make too much to qualify for Medi-Cal and have jobs not providing health insurance. They can still buy private insurance but it is much more expensive. People who prepaid for their coverage can seek a refund.

Smith predicted it will be a blow not just to those who lose coverage but to the state's health care system as a whole.

"The lines in the ERs are going to be longer because people are not going to be able to get affordable preventive care," Smith projected. "They're just going to get sicker and then end up in the ERs. People will overall incur more medical debt. Hospitals will have more uncompensated care."

The change is nationwide. As of mid-July, about 538,000 people in the DACA program across the U.S. are ineligible to enroll in any state-based insurance marketplace and are unable to access premium subsidies or cost-sharing assistance.

Artificial intelligence is appearing more prominently in many aspects of life and research suggests older populations are curious, yet remain wary of using the technology in their everyday lives.

According to Stats Indiana, there are more than 1.5 million Hoosiers aged 65 and older, or 18% of the state's population. Experts said it is likely the demographic will use AI in some form in the next few years, either by choice or necessity.

Dr. Shaun Grannis, vice president of data and analytics for the Regenstrief Institute on Aging, said AI offers real benefits.

"It can reduce loneliness through conversation, provide reminders for medications and appointments," Grannis outlined. "It can support cognitive stimulation via games, storytelling, news updates."

The technology can also offer a low-pressure way to access information on public services, he added, which is valuable for those with mobility issues or those who feel intimidated by technology.

Grannis cautioned any tool which can be used for good can also lead to problems. He noted AI can create a false sense of companionship and mask social isolation. Overdependence is a legitimate concern, he argued, if the technology becomes a "crutch" for all forms of interaction.

"All cognitive activities or decision-making, it can actually lead to and create a negative feedback loop, lead to a decline in engagement and even basic self-management skills," Grannis explained. "This is risky."

Grannis believes one solution is designing AI systems to complement, not replace, human interaction. He stressed it can be done though building broader support ecosystems including family, friends, caregivers and community services. Grannis emphasized it would encourage real-world activity, prompting the user to go for a walk, call a grandchild or attend a local senior event.

If you have an extra five minutes, you can save a life because you can learn cardiopulmonary resuscitation at no cost from a new mobile, hands-only CPR kiosk.

The new kiosk is in the lobby of Saint John's Health Center in Santa Monica. The machine's touch screen gives a brief overview of hands-only CPR and you can practice right there, on a mannequin.

Dr. Rigved Tadwalkar, cardiologist at St. John's, said it is an easy way for people to get more comfortable giving chest compressions in an emergency.

"It's a lot like a video game but of course, a lot more important than a video game," Tadwalkar pointed out. "It gives real-time feedback about the depth and rate of compressions, proper hand placement, which are all factors that influence the effectiveness of CPR."

The American Heart Association operates the St. John's mobile kiosk and a stationary model at L-A-X with support from the hospital. Santiago Canyon College in Orange County also has a mobile hands-only C-P-R kiosk now through September, sponsored by Edwards Lifesciences.

Steven Munatones, an Orange County business owner, said he survived what's known as a "widowmaker" heart attack which led to cardiac arrest nine years ago, thanks to his 17-year-old son, who gave him immediate CPR with instructions from a 911 operator.

"You don't have to put your mouth to anybody's mouth," Munatones explained. "You just put your hand on their chest and pump. He saved me, and others can do the same, anywhere. So, it's absolutely a lifesaving, heroic act that anybody can do."

Statistics show 350,000 Americans suffer from cardiac arrest outside a hospital each year and about 90% die, in part because they do not receive CPR. About 70% of those cardiac arrests happen at home, so people often depend on family or friends to give CPR before an ambulance arrives.