While many families walk to raise money for research in the latest Walk to End Alzheimer’s, one Black Hills family is on the front lines to newly developed care. A promising drug that could help slow the progression of the disease.
It’s a beautiful September Day in Rapid City’s Founders Park. Two hundred fifty people are dressed in purple and ready to tackle the M Hill hike to raise money for Alzheimer’s.
Denise and David Swartz are a couple from nearby Hot Springs. David was diagnosed with the disease in 2023 and is currently living in the early stages of Alzheimer’s. Then an opportunity came knocking.
“At about the same time that the new drug Leqembi was approved by the FDA," Swartz said. "He has no Alzheimer’s in his family, so it came as a complete shock to us.”
As Alzheimer’s progresses, dense plaque structures form inside the brain, impairing memory and adding gradual challenge to day-to-day-life. Leqembi is an injection that actively targets the protein buildups, binding to and breaking apart those plaques to slow the march of the disease.
Leqembi, taken every two weeks, is not a cure. Instead, research indicates it’s a chance at hope and better quality of life for Alzheimer’s patients who take it.
Denise Swartz said after a brief battle achieving a diagnosis, the fight was on.
“We found out yeah, it’s early signs of Alzheimer’s," Swartz said. "We went to a neurologist, spoke with him and talked about the Leqembi. We took it upon ourselves to go to Mayo Clinic, got on board there with the doctors, and they told us Dave was a prime candidate for it and they would oversee it.”
And it is a fight with each infusion.
“We’ve been on, what 17 infusions? We have number 18 coming up on Monday in Fall River," Swartz said. "The first few infusions were kind of bad, but don’t give up.”
Side effects of the drug include headaches, dizziness, nausea, confusion, and fever. Despite this, the couple said they want to get the word out.
“It’s still new so we’re still learning exactly what’s going to happen," Swartz said. "Advocate for yourself, if one doctor tells you no, continue onto others because we’ve got to have hope. With the new drugs coming out, there hasn’t been anything forever. Like I say, there’s no cures, but at least it’s hopefully slowing down progression. It’s something new.”
There is one hangup though. The sometimes-staggering cost of healthcare that can render treatments like these inaccessible.
“The transfusions are also costly – they’re about $800 every time you’re there, two times a month," Swartz said. "But I bought a $200 supplemental insurance policy ten years ago and they cover everything. That really helps. There’s many things you need to know about this before you dive into it.”
While Medicare Part B covers some of the treatment, it’s not uncommon for patients to expect to pay over $5,000 yearly out of pocket.
Celina Block is an administrator at Avantara North in Rapid City, a long-term, advanced care facility. She said these events, and the development of new drugs, reflects an open community for patients.
“There’s a lot of families and people that are diagnosed with Alzheimer’s, and just knowing this community is here and that they support – be it monetary or just being present," Block said. "Giving the caregivers support too, because they deal with it as well. It’s amazing just seeing that comradery in the community.”
Block said there are options for the newly diagnosed to get involved with that community.
“I think it’s good to ask questions," Block said. "There’s so many resources out there whether that be the Alzheimer’s association, they have so many resources online, there’s phone numbers they can call and ask. Also, there’s communities in Rapid City to support whether that be a nursing home, skilled nursing, senior living. We’re all here.”
And though this year’s walk fell short of the stated goal, the event still managed to raise more than $47,000 to support these resources.
"I think this is a great turnout and working with the Alzheimer’s Association, they’ve been great, they communicate so well," Block said. "They came to my facility to talk to my staff as well to give them more information. They’ve been great and supportive throughout the process, it’s a great turnout today.”
And with that, the walk is underway, and hundreds begin their march to raise awareness for a disease that has touched too many lives and offer some glimmer of hope for the future.