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National network to accelerate research for rare diseases in kids

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July 5, 2024 — 

A group of researchers from the Rady Faculty of Health Sciences and Children’s Hospital Research Institute of Manitoba (CHRIM) has leadership roles in a national initiative to accelerate research and treatment for rare diseases in children. 

RareKids-CAN: Pediatric Rare Disease Clinical Trials and Treatment Network received $20 million in funding earlier this year from the Canadian Institutes of Health Research. The funding is part of the government of Canada’s national strategy for drugs for rare diseases, announced in 2021. 

“The goal is to provide the essential infrastructure and resources needed to give children with rare diseases in Canada the opportunity to participate in clinical trials closer to home,” said Dr. Lisa Knisley, assistant professor in the College of Nursing 

Knisley is co-lead of the initiative’s Knowledge Mobilization Platform, along with CHRIM investigator Dr. Terry Klassen.  

“We will be working with experienced clinicians, researchers, parents and families living with rare diseases to share clinical trial opportunities and study findings, in ways that are meaningful, accessible and useful,” Knisley said. 

Dr. Lauren Kelly, associate professor of pharmacology and therapeutics in the Max Rady College of Medicine, is on the network’s executive team and leads training for the initiative.  

“RareKids-CAN will ensure that there are clinical trial leaders with expertise in rare diseases that are supported to lead life-changing research for generations to come.” 

The group noted that 14,000 children under the age of 15 die from rare diseases in Canada every year. 

“There are over 8,000 different rare diseases, and over 50 per cent of those affect children,” said Dr. Cheryl Rockman-Greenberg, distinguished professor of pediatrics and child health at the Max Rady College of Medicine. 

Rockman-Greenberg has worked in rare disease research for her entire 50-year career. Her focus is on the regulatory affairs and advocacy aspects of the RareKids-CAN project.  

She said the ability to diagnose children with rare diseases has increased significantly over the last decade, thanks to advances in gene diagnosis technology. However, the cost for treatments can be very expensive. 

“Our ability to diagnose these disorders has increased, but access to new diagnostic techniques and new treatments has not kept pace,” she said. 

Under various platforms, the initiative brings together leaders in several areas, including clinical trials, pharmacology, drug development and data analysis. 

“There are many doctors involved. And, of course, the patient’s voice will play a major role in this strategy,” Rockman-Greenberg said. 

 

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Tips for shopping for Medicare Advantage plans

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Shopping season for Medicare coverage is about to begin. With it comes the annual onslaught of TV ads and choices to consider.

People eligible for the federal government’s Medicare program will have from Oct. 15 to Dec. 7 to sign up for 2025 Medicare Advantage plans, which are privately run versions of the program. They also can add a prescription drug plan to traditional Medicare coverage.

Many people on Medicare Advantage plans will probably have to find new coverage as major insurers cut costs and pull back from markets. Industry experts also predict some price increases for Medicare prescription drug plans.

Shoppers often have dozens of options during this sign-up period. Here are some things to consider.

Don’t put off shopping for Medicare coverage

Start thinking about next year’s coverage before the annual enrollment window begins. Insurers will usually preview their offerings or let customers know about any big changes. That makes anything arriving in the mail from your insurer important to read.

Insurance agents say many people wait until after Thanksgiving to decide coverage plans for the new year. That could be a mistake this year: The holiday falls on Nov. 28, leaving slightly more than a week to decide before the enrollment window closes.

Look beyond the premium

Many Medicare Advantage plans promote a $0 premium. That may sound attractive, but price is only one variable to consider.

Shoppers should look at whether their doctors are in the plan’s coverage network and how prescriptions would be covered. They also should know the maximum amount under the plan that they’d have to pay if a serious health issue emerges.

Plans offer many supplemental benefits, including help paying food or utility bills. Don’t let those distract from understanding the core coverage, said Danielle Roberts, co-founder of the Fort Worth, Texas, insurance agency Boomer Benefits.

“Remember that we buy health insurance for the big things, not the frills,” she said.

How to get help shopping for plans

The federal government operates a plan finder that lets people compare options. The State Health Insurance Assistance Program can be another resource. Insurance brokers or agents also guide customers through searches.

Sometimes a plan’s coverage doesn’t work as expected. If that happens, there’s another enrollment window in the first three-months of each year where some shoppers may be able to make a change.

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The Associated Press Health and Science Department receives support from the Howard Hughes Medical Institute’s Science and Educational Media Group. The AP is solely responsible for all content.

The Canadian Press. All rights reserved.

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The US is mailing Americans COVID tests again. Here’s how to get them

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WASHINGTON (AP) — Americans can once again order COVID-19 tests, without being charged, sent straight to their homes.

The U.S. government reopened the program on Thursday, allowing any household to order up to four at-home COVID nasal swab kits through the website, covidtests.gov. The tests will begin shipping, via the United States Postal Service, as soon as next week.

The website has been reopened on the heels of a summer COVID-19 virus wave and heading into the fall and winter respiratory virus season, with health officials urging Americans to get an updated COVID-19 booster and their yearly flu shot.

“Before you visit with your family and friends this holiday season, take a quick test and help keep them safe from COVID-19,” U.S. Health and Human Services Assistant Secretary for Preparedness and Response Dawn O’Connell said in a statement.

U.S. regulators approved an updated COVID-19 vaccine that is designed to combat the recent virus strains and, they hope, forthcoming winter ones, too. Vaccine uptake is waning, however. Most Americans have some immunity from prior infections or vaccinations, but under a quarter of U.S. adults took last fall’s COVID-19 shot.

Using the swab, people can detect current virus strains ahead of the fall and winter respiratory virus season and the holidays. Over-the-counter COVID-19 at-home tests typically cost around $11, as of last year. Insurers are no longer required to cover the cost of the tests.

Before using any existing at-home COVID-19 tests, you should check the expiration date. Many of the tests have been given an extended expiration from the date listed on the box. You can check on the Food and Drug Administration’s website to see if that’s the case for any of your remaining tests at home.

Since COVID-19 first began its spread in 2020, U.S. taxpayers have poured billions of dollars into developing and purchasing COVID-19 tests as well as vaccines. The Biden administration has given out 1.8 billion COVID-19 tests, including half distributed to households by mail. It’s unclear how many tests the government still has on hand.

The Canadian Press. All rights reserved.

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Free COVID tests are back. Here’s how to order a test to your home

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WASHINGTON (AP) — Americans can once again order free COVID-19 tests sent straight to their homes.

The U.S. government reopened the program on Thursday, allowing any household to order up to four at-home COVID nasal swab kits through the website, covidtests.gov. The tests will begin shipping, via the United States Postal Service, as soon as next week.

The website has been reopened on the heels of a summer COVID-19 virus wave and heading into the fall and winter respiratory virus season, with health officials urging Americans to get an updated COVID-19 booster and their yearly flu shot.

U.S. regulators approved an updated COVID-19 vaccine that is designed to combat the recent virus strains and, they hope, forthcoming winter ones, too. Vaccine uptake is waning, however. Most Americans have some immunity from prior infections or vaccinations, but under a quarter of U.S. adults took last fall’s COVID-19 shot.

Using the swab, people can detect current virus strains ahead of the fall and winter respiratory virus season and the holidays. Over-the-counter COVID-19 at-home tests typically cost around $11, as of last year. Insurers are no longer required to cover the cost of the tests.

Since COVID-19 first began its spread in 2020, U.S. taxpayers have poured billions of dollars into developing and purchasing COVID-19 tests as well as vaccines. The Biden administration has given out 1.8 billion COVID-19 tests, including half distributed to households by mail. It’s unclear how many tests the government still has on hand.

The Canadian Press. All rights reserved.

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