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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March is National Nutrition Month and rising grocery costs, and food recalls have consumers revisiting the idea of growing their own healthier and more affordable food. Research from gardening site, Gardenp.com shows the average garden produces $600 worth of produce. Indiana farmer's markets attract large numbers of Hoosiers who want fresh, farm-grown fruits, vegetables, and other staples at reasonable prices.

Philip Hartman, president of InstaFarm, which creates countertop food gardens, said foods grown in the healthiest chemical-free soil will produce optimum crops.

"So your food that you buy at the grocery store, your produce, has typically lost up to around 50% of its nutritional value by the time it gets to the store. Also, you don't know how it was grown. So the quality of your produce is linked to the quality of your soil," he said.

Lower costs, convenience, and fewer pesticides make garden-to-table food even more appealing. Hartman advises beginner gardeners to use healthy, nutrient-rich soil because it improves the nutritional value of fruits and vegetables. Gardens use a large amount of soil nutrients and when soil is depleted of these necessary nutrients, the crops are affected too.

Hartman works with students from kindergarten through high school and is passionate about helping children understand where their food comes from. He notes children don't get to see a farm or where their food is grown until they are well into their late teens.

"It's amazing, you know, children that don't usually like vegetables, when they engage in the growing process, all of a sudden, they're inspired to eat this and it's a great way to train them about what's good for them and how to recognize healthy foods," he added.

Gardenpals.com says millennials make up 29% of gardener demographics. Indiana is home to over 60,000 farms covering over 19 million acres. The state ranks in the top five for growing corn, soybeans, blueberries, tomatoes and melons, according to the Indiana Department of Agriculture.

A Minnesota Senate committee today will hear testimony about a rare but scary scenario for families: sudden cardiac events in school settings.

A bill calls for staff training requirements for responding to emergencies. The American Heart Association says each year, more than 23,000 children experience cardiac arrest outside a hospital and 40% are sports-related.

The proposal would require a school district or charter school to develop a Cardiac Emergency Response Plan, so staff know what to do in those critical moments.

Kelly Youland, a Woodbury mother, experienced it firsthand when her baby became unresponsive leaving a Chicago baseball stadium.

"Ultimately, she required CPR for 16 minutes before her pulse came back," Youland recalled.

She and her husband both work in the medical field and had the instincts to help get lifesaving efforts underway. Thankfully, her daughter recovered, inspiring Youland to speak in support of the bill. It includes $2 million to help schools develop plans and secure automated external defibrillators. The Minnesota State High School League testified existing protocols and partnerships already cover this need.

The League did express a desire to work with lawmakers on this measure, citing the need for flexibility amid resource constraints. Youland acknowledged she and her family were lucky but other emergency responses have been slow to come together. She feels such situations can be avoided.

"Our schools prepare for all sorts of emergencies, whether they're fire, weather, lockdown," Youland pointed out. "This is something that our schools need to prepare for."

A bill adopted by the Minnesota Legislature last year called on the Education Department to provide a blueprint for the plans but they remain optional. Last month, a Maple Grove High School track athlete died after going into cardiac arrest following a non-team practice near the school.

By Nina B. Elkadi for Sentient.
Broadcast version by Nadia Ramlagan for Kentucky News Connection reporting for the Sentient-Public News Service Collaboration

The day that Robert F. Kennedy Jr. was confirmed secretary of Health and Human Services (HHS), President Donald Trump established a commission in service of the Make America Healthy Again tagline. The purpose of the commission, according to the executive order, is to "address the growing health crisis in America," by redirecting our national focus to "drastically lowering chronic disease rates and ending childhood chronic disease." The MAHA Commission also appears poised to extend RFK's reach beyond HHS to the department tasked with "nourishing Americans," but some food system reformers are skeptical that change is ahead.

After endorsing Trump in 2024, former presidential candidate Robert F. Kennedy Jr. claimed that Trump promised him "control" of several agencies, including the United States Department of Agriculture and Health and Human Services. In a video of Kennedy outside the USDA building in Washington D.C., he criticized large-scale industrialized agriculture and its negative effect on soil and water health. The description of the video reads: "When ‪@DonaldJTrumpforPresident‬ gets me inside the USDA, we're going to give farmers an off-ramp from the current system that destroys soil, makes people sick, and harms family farms."

Some advocates are calling into question his ability to follow through on the promises he made.

"He's going to do nothing to farming because he has no authority," says Ken Cook, president of the non-profit Environmental Working Group. "I don't think it's going to be the revolutionary era at USDA in the way Kennedy suggests."

The future of food and agriculture policy is largely left in the hands of the Department of Agriculture and the Environmental Protection Agency, the heads of which are also on the MAHA commission. Secretary of Agriculture Brooke Rollins is not expected to tighten regulations on corporate interests, and thus far has been taking the advice of the Department of Government Efficiency to cut - not add - programs.

EPA Administrator Lee Zeldin, dubbed the "great deregulator" is unlikely to increase pollution enforcement and other environmental protections. As of late, the USDA secretary has not been a position of great reform; former USDA secretary Secretary Tom Vilsack spent his career revolving from industry to government and back again. As head of the Department of Health and Human Services, it is unclear what sort of oversight Kennedy will have over the agricultural changes he was prioritizing months ago.

DOGE Takes on USDA

On February 16, the Department of Government Efficiency, spearheaded by Elon Musk, put out a call on X asking for "insights on finding and fixing waste, fraud and abuse relating to the US Department of Agriculture."

"It's essentially a wildfire that's burning through the federal government right now," says Sarah Sorscher, director of regulatory affairs at Center for Science in the Public Interest. "[They're] intent on dismantling the federal government, which will undermine the agenda of RFK Jr. and his MAHA cohort, because without a functioning federal government, you can't have smarter regulation. You can't have a smarter approach to food safety and chemical safety and healthcare product safety."

On January 31, the Trump White House announced a de-regulatory blitz, requiring that "whenever an agency promulgates a new rule, regulation, or guidance, it must identify at least 10 existing rules, regulations, or guidance documents to be repealed."

"It's been made very clear that those departments, USDA, EPA, interior, energy, they're going about their own deregulatory agenda, and most of that's not consistent with what I thought was Kennedy's worldview for years, which was that we needed to protect the environment from greedy, corporate interests," Cook says.

Left or Right, Big Ag Is Around

Farm Action Fund, the legislative arm of the non-profit advocacy group Farm Action, came out in support of Kennedy in late January.

"His food and agriculture policy has been very much in line with Farm Action's mission around addressing corporate abuse in the food system [and] corporate influence over government policy," says president and co-founder of Farm Action Angela Huffman.

Farm Action is largely focused on reducing corporate influence within the food system, and in a blog post they outlined how Kennedy could change the food system while at HHS. They write that Kennedy could "shape the Trump administration's agriculture and food policy." For Farm Action, the issues Kennedy has brought to the forefront have not been at the forefront of agricultural policy in decades.

"Folks have been fighting for so long on these issues, and [Kennedy] has brought them to the level that the President of the United States tweeted about taking on the industrial food complex," Huffman says.

While Kennedy has made agricultural reform a key talking point, as HHS Secretary it is unclear how much he could actually get done. Brooke Rollins, Secretary of Agriculture, is so far less vocal about flipping the system on its head than Kennedy was on the campaign trail.

Both Huffman and Cook say that "Big Ag" has dominated agricultural policy on both sides of the aisle.

"We don't defend Democrats if they don't do things well and drop the ball," Cook says. "We don't work for the DNC. I've had pretty harsh things to say about [Secretary Tom] Vilsack when he was nominated by Biden."

After his first stint as Secretary of Agriculture, Tom Vilsack immediately took a position at a dairy lobbying trade group, confirming criticisms of his "friendliness" to industry.

Misaligned 'Alignment'

For many advocates in the food and agriculture space, some of Kennedy's claims have been far from controversial, such as promoting healthy food and reducing consolidation in the industry. Some of his other takes, like vaccine skepticism (as HHS Secretary he is already breaking promises to not alter childhood vaccine schedules), are more than enough for some, like Cook, to pump the brakes.

Huffman, of Farm Action, tells Sentient that her organization is very strictly focused on agriculture issues.

"We understand that he has broader interests than that, and we really don't weigh in on issues outside of our lane," Huffman says.

In his role, Kennedy wants to target certain food additives that are given special exemptions and can be added to food without approval from the Food and Drug Administration. The administration he is working for, though, recently cut numerous FDA staff members, and the deputy commissioner for human foods (who led the ban on Red Dye No. 3) resigned on February 17.

"If your goal is to get a better functioning federal government, it's not the right approach to go in there with a hatchet and start tearing things down," Sorscher says. "What you want to be doing is going in in a surgical way, and operating with a scalpel and not a hacksaw. I think this administration still has not learned how to do that, and it's actually moving us in the wrong direction."


Nina B. Elkadi wrote this article for Sentient.


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