CHARLESTON, W.Va. -- People with rare diseases are particularly vulnerable during the coronavirus pandemic, and West Virginia has just enacted a new bipartisan law designed to provide them with more support.

The Rare Disease Advisory Council gives patients a forum to communicate with policy makers about pressing health care issues.

The council also will educate patients about new treatments and health care developments, according to Fernando Andrzejevski, executive director of the West Virginia Hemophilia Foundation.

"There are so many new therapies coming out," says Andrzejevski, whose son has hemophilia. "I think the last data I saw is that 560 drugs are currently under clinical trial for different types of rare diseases, which is the highest it has ever been."

The council will have 12 members appointed by Gov. Jim Justice, including doctors, family members with rare conditions and state health officials. Members will be appointed later this year.

West Virginia joins 11 other states that have similar legislation including New York, Pennsylvania and North Carolina.

Andrzejevski says these boards lay the groundwork across the nation to provide better care for people with serious illnesses such as hemophilia, cystic fibrosis and childhood cancers.

"Only 5% of rare diseases actually have a treatment," he points out. "So establishing and creating partnerships in the states, I think that will be very important to the councils to make sure families don't have miseducation and miscommunication."

About 30 million Americans have a rare disease, according to the National Institutes of Health.

Health officials estimate about 180,000 West Virginians will be diagnosed with some form of uncommon medical condition during their lifetime.


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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.