Today is Rare Disease Day, an annual observance to raise awareness about uncommon and often misdiagnosed medical disorders.

Support for families and loved ones of individuals with rare diseases is often limited simply because of their lack of familiarity. One such hereditary condition, known as Hereditary Hemorrhagic Telangiectasia or HHT, affects more than 600 Hoosiers, according to the Indiana Hemophilia and Thrombosis Center.

HHT can cause spontaneous and chronic nosebleeds, and only 20% are estimated to know they have it. Early detection is important, said Dr. Magdalena Lewandowska, a hematologist at the center.

"We confirm this with genetic testing," she said. "So, about 90% of patients who have HHT have a gene mutation. There's a 50% chance of inheriting it if one of your parents is affected with HHT."

She said common symptoms can include malformed blood vessels in the brain, lungs and liver, or pin-sized reddish-purple spots on a person's skin.

An additional barrier for patients with rare diseases is locating a specialist to treat them. The Undiagnosed Diseases Network Foundation defines an "ultra-rare" disease as one that affects one in 50,000 people.

Doctors face challenges in diagnosing HHT and other unique illnesses because a specific disease may not be verifiable, due to very little research about it in medical journals. Patients can be frustrated when the necessary tests are unavailable, or the disease mimics another disorder, leading to misdiagnosis.

In 2022, registered nurse Abby Terzini had symptoms of HHT. She said she was in denial - although three family members had the disease.

"I just started having more nosebleeds," Terzini said. "'It's just allergies' - or, 'It's just this, that or the other, it's not a big deal. I'm not having any big issues with this, so I don't need to go to the doctor.'"

Terzini said she eventually decided to get help from doctors who prescribe "bleed kits" containing medication to prevent or lessen the severity of a nosebleed. In 2024, it was reported that a drug used to treat bone marrow cancer and Kaposi sarcoma - a cancer that affects the blood vessels and lymphatic system - is showing promising results for HHT as well.

About 1.3 million Missourians are currently enrolled in Medicaid and nonprofits around the state have warned proposed federal cuts would be devastating.

In Missouri, children are the largest group served by Medicaid, with 61% enrolled. States could face more than $800 billion in Medicaid cuts and more than $200 billion in the Supplemental Nutrition Assistance Program, known as SNAP or food stamps.

McClain Bryant Macklin, vice president of policy and impact for the Kansas City nonprofit Health Forward Foundation, emphasized how important Medicaid is to the organization.

"From a policy perspective as well as where we tend to lend our funding support is squarely in that direction, and Medicaid access has been our primary policy issue, really since our inception," Bryant Macklin explained. "It's just our number one priority."

Supporters of the cuts argued Medicaid is inefficient because of waste and fraud, and restructuring or reducing funding could improve sustainability.

Bryant Macklin noted the Health Forward Foundation played a key role in advocating for Medicaid expansion in Missouri, contributing to policy changes which extended coverage to thousands of low-income residents. She stressed as a Medicaid expansion state, Missouri will need to find funding from other critical sources, which could result in further challenges.

"State legislators are going to be forced to -- and administrators forced to -- find those dollars elsewhere," Bryant Macklin pointed out. "That elsewhere will be from other key social services that folks are relying upon and that the state has grown accustomed to receiving that federal support."

Those in favor of the cuts said they would give states greater control over Medicaid through block grants, which are fixed amounts of federal funding states can use with more flexibility, to tailor programs to local needs and priorities.

Indiana is losing millions in public health funding as the federal government cuts grants for state and local programs.

In Marion County, officials confirmed the immediate loss of a $450,000 immunization grant, leaving employees searching for ways to continue vaccination efforts amid ongoing disease outbreaks.

Dr. Virginia Caine, director and chief medical officer for the Marion County Health Department, highlighted the cuts during a town hall hosted by Rep. André Carson, D-Ind.

"We are now seeing that they've cut all state and local health departments budgets," Caine explained. "We have to be very concerned about our ability to protect the public."

Caine noted the federal government eliminated $13.1 billion in funding for state and local health departments, part of a broader rollback of pandemic-era grants. Indiana Department of Health legislative director Rachel Swartwood recently commented the state's goal is to ensure no direct services to Hoosiers are interrupted.

State health officials estimate Indiana will lose about $40 million because of the cuts. Additionally, the U.S. Department of Health and Human Services recently announced plans to eliminate 10,000 full-time jobs. The totality of the cuts is very concerning for Caine.

"When we had this fentanyl epidemic with overdoes -- we have the bird flu taking place across this country -- we have to be concerned," Caine emphasized. "Do we have the workforce to come out and meet these demands?"

Marion County officials are evaluating how to fill the funding gap. Caine added the department has 300 positions supported by grants and expressed concern job losses and service reductions could follow if no alternative funding emerges.


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Oregon does not have enough health care workers and the need continues to grow.

Service Employees International Union Local 49 members said retention is a key cause of the shortage and they are lobbying for two bills in Salem to improve job quality across the industry. Over the next 10 years, health care and social services will need to bring in nearly 225,000 workers, according to the Oregon Employment Department.

Matt Swanson, political strategist for SEIU Local 49, said meeting the growing demand will take every possible intervention.

"I heard from many workers about how tired they are," Swanson reported. "How difficult it is to provide quality patient care when there just aren't enough people working."

One bill at the top of the union's priority list would address unchecked workplace violence, which health care workers experience at a higher rate than any other industry. Another would expand funding to allow providers to continue to work while going to school for advanced training.

Felipa Nesta, a licensed practical nurse at Kaiser Permanente, is using existing funding to get a nursing degree while working. She said Senate Bill 27 would help meet the growing demand for health care providers by increasing funding for such programs as well as providing wage replacement, child care, and transportation.

"It would help so more people can get into health care jobs without being buried in debt," Nesta emphasized.

Rachel Dennis, a certified nursing assistant at PeaceHealth Sacred Heart Medical Center, said Senate Bill 537 mandates de-escalation training as well as systems to notify providers of potentially violent patients. It also guarantees counseling and paycheck protection for injured employees. She noted nearly all her coworkers have faced verbal or physical assault on the job.

"I'm tired of seeing my coworkers leave because they're scared to go to work," Dennis stressed.

Both bills have had public hearings and are scheduled for work sessions in Salem.