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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By Lauren Cohen / Broadcast version by Farah Siddiqi reporting for the Kent State NewsLab-Ohio News Connection Collaboration.
When Derek Calkins woke up in the hospital in January 2021, he couldn’t see or move.
He didn’t have his glasses and his legs and arms weren’t working, he recounted. With tubes coming out of his body and a ventilator in his neck, he couldn’t talk, and he couldn’t discern what was real and what wasn’t.
“I was scared,” Calkins said. “I didn’t know what was going on. No one was coming in.”
He later learned that after a successful planned surgery on Dec. 1, 2020, he aspirated fluid into his lungs and had to have an emergency surgery. Although it was successful, Calkins’ oxygen levels were still low. Then he tested positive for COVID-19 and was moved to the intensive care unit at another hospital.
As it was the height of the COVID-19 pandemic, that hospital had implemented a no-visitor policy. Calkins said he was incredibly disoriented, going in and out of consciousness due to pain medications, and craving human contact — but couldn’t have someone there in person to advocate for him.
Legislation that took effect last month would prevent others from experiencing what Calkins did, proponents say.
“Never Alone Act” prohibits denial of a patient advocate during public health emergencies
The “Never Alone Act,” or H.B. 236, was introduced by Ohio State Reps. Melanie Miller (R-City of Ashland) and Beth Lear (R-Galena) and signed into law by Gov. Mike DeWine in December. It went into effect March 20.
The bill passed in the Ohio House of Representatives with a unanimous vote of 89-0. It “prohibits a congregate care setting from denying a patient or resident access to an advocate during public health emergencies.”
Miller said in a press release that her awareness of the need for patient rights protection inspired her to sponsor the bill. Neither sponsor returned requests for comment.
Susan Wallace, president of the nonprofit trade group LeadingAge Ohio, which represents roughly 375 aging service operators in Ohio, said her organization created the first draft of the protocol when they brought families back together in visitation during the pandemic.
“There was a concern from a number of groups, including the sponsor lawmakers,” Wallace said. “They wanted to make sure that never happens again, that kind of separation. So, they drafted this bill.”
Preventing isolation
The Ohio Laws & Administrative Rules Legislative Service Commission has a bill of rights for nursing home and residential care facility residents. It includes the right to private visits at any reasonable hour and unrestricted communications with a resident’s family.
Wallace said the new law will add an extra layer of protection for patient rights, though it won’t have a day-to-day impact because emergency pandemic orders are not in effect anymore.
“Having connections to loved ones is always important,” she said. “Our nursing facilities are not cut off from the world, they're nested within the communities, and they are extensions of the family, and so anything that we can do to preserve those connections is really important.”
Physical and mental consequences of isolation
Calkins said the isolation he experienced in the ICU took a major toll on him.
Eventually, he said his wife was allowed one-hour visits, and when he was transferred to a long-term care facility in early February, she was able to come once per week.
“I had a little clock by the TV,” Calkins said. “I would seriously stare at the clock waiting for that one hour she could come in. It was bad.”
After being moved to a rehab unit, his wife could visit daily.
“One day, she took my kids in front of the hospital, and I could see them through the window,” he said. “Both my girls were crying because they couldn’t visit me, but at least they saw me.”
Mary Malek, a Twinsburg-based clinical psychologist who specializes in medical trauma, said visitation restrictions took a toll on healthcare workers as well as patients.
“The collateral damage of this… no one is unaffected,” Malek said. “You’re trained to save lives. You’re trained to go in to be able to do your job … and it came at a high cost.”
She said she had experience with emergency medical technicians, first responders and physicians who lost their jobs or were threatened with their medical licenses for going against the mandate. In the future, she said she hopes people will be better protected.
In addition to his social isolation, Calkins said because he wasn’t shifted in his bed as often as he needed to be, he developed multiple bed sores. His legs and arms wouldn’t work properly since they were left in one position for so long.
He believes if his wife had been allowed to be there, she would have advocated for him to be taken care of properly. He said H.B. 236 gives him hope that nobody else will have to go through what he went through.
“Having someone there and being able to talk to them and being able to describe to you what’s going on, that helps tremendously,” he said. “You’re no longer alone.”
This collaboration is produced in association with Media in the Public Interest and funded in part by the George Gund Foundation.
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Law enforcement officers and drug prevention advocates in Missouri are joining forces to tackle prescription drug misuse.
As part of the Drug Enforcement Administration's "National Prescription Drug Take Back Day," five collection sites will be set up across Taney and Stone counties on April 26.
Data from two years ago showed around 190,000 Missourians misused opioids, including 180,000 who misused prescription pain relievers.
Marietta Hagan, project coordinator at Cox Health, warned prescription drug misuse contributes heavily to opioid use disorder.
"People would get prescription medication that didn't belong to them as easy as walking into their parent's medicine cabinet and pulling it out of there, or pulling it out of the side night table at bedtime," Hagan explained.
Volunteers will be at the sites offering free safety tips and disposal kits, making it easy for families to clear out their medicine cabinets.
Hagan emphasized "Drug Take Back Day" is about more than just safe disposal. It is also a reminder to store medications properly to prevent misuse. She shared guidance on how to safely get rid of unwanted medications.
"Previously government agencies had encouraged actually the flushing of medications," Hagan noted. "But we now know thanks to environmental science, that is not recommended. Those medications end up in our water supply, in our lakes and our streams."
Most prescription and over-the-counter medications will be accepted, including pills, patches, and vapes without batteries. National Prescription Drug Take Back Day is held twice a year, typically in April and October.
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A Tennessee nonprofit is warning that potential Medicaid cuts could threaten crucial support for the state's nearly 1 million family caregivers.
Medicaid supports 4.5 million individuals through home health-care services nationwide.
Megan Schwalm, president and CEO of the Tennessee Caregiver Coalition, said more than half of its funding comes from the now-dismantled Administration for Community Living - which has been folded into the Department of Health and Human Services.
Schwalm said federal funding cuts have affected the coalition, which provides respite services for people caring for loved ones with dementia or other serious conditions.
"Our state typically reimburses at $23.44 an hour for respite, and so us being able to provide at about $5 an hour is a huge cost savings," said Schwalm. "But with those cuts to Medicaid and the Administration for Community Living, we won't be able to provide those services any longer."
She said the funding cuts have already forced the loss of a staff position and nearly all outreach efforts for respite services across Tennessee.
Medicaid is jointly funded by states and the federal government, but Congress is proposing cutting Medicaid spending by $880 billion over 10 years.
According to AARP, Tennessee already ranks poorly among states for its lack of supports and services for caregivers and people with disabilities.
Schwalm acknowledged that Medicaid could benefit from reform, but she said dismantling it without a clear, comprehensive plan would be detrimental to the people of Tennessee.
"These cuts to Medicaid are coming, but there is no safety net in place," said Schwalm. "There is no alternative. And so it is very unclear what will happen to these folks in these programs."
She emphasized the importance of Tennesseans letting their elected officials know how they feel about safeguarding these safety net programs.
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