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Those With Rare Diseases Need to Wait, as Usual

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Science has developed the ability to research, develop and create functional cures for many of our so-called “incurable diseases”, but having the ability to do something and actually doing it are two different things. Medicine has always suffered from a problem with “knowing-doing”. It is the difference between what a doctor actually does for a patient and what can be done with all that we know. Developmental breakthroughs in medicine are allowing doctors to do things they never could imagine before. Sometimes these break-thoughts don’t fit into businesses/governmental financial or regulatory systems, meaning that it can take a long time for patients to actually benefit, a time many patients may not have.

The National Institutes of Health in America invest more than $40 Billion in biomedical research each year, and the private sector twice as much. The discoveries are valued by all, but why is it so hard to use these discoveries?

Science’s ability to engineer medicines has far outpaced how these medicines are actually built, tested, and put into human beings. Artificial Intelligence has assisted the community by mapping the human genome in efforts to cure various diseases. The US Government defines rare diseases as those that affect fewer than 200,000 people in America. Some affect only a handful of people. There are over 7000 different rare diseases, with more than 30 million people in America diagnosed with one of them. That is 10% of the US population. So improving how society can find and care for these patients could have a great impact. Problem is that the health system is not flagging enough people with these diseases, while many individuals don’t even know what disease they may have, or that they indeed have a disease. A.I. steps up front to assist in the recognition, tracking, analyzing, and identifying of these patients through computer-programmed systems. Put one’s symptoms into the machine, and often voila, a point from which a doctor can begin his medical investigation and treatment. A diagnostic odyssey in each individual case.

Artificial Intelligence has a prominent place within our health system, including helping design new treatments, helping predict which treatment is better for which patient, and screening for rare diseases with suggested diagnoses to boot. Why are many with rare diseases often left out in the cold, to search on their own for a cure? Money! Simple.

Who makes medicines, and invests millions in treatments and research for diseases? Pharmaceutical Firms.
What are they but profit centers for investment bankers, massive corporations, and a financial structure centered upon the shareholder, and not the average joe? Solutions can be found, but the willingness to spend way beyond what a firm can make in profits needs to be there. Sure our DNA is constantly changing, and evolving biologically. Making a drug that cures cancer, may cure some, but certainly not all forms since each person is unique, their biology specific to that person. Many doctors realize that their methods are much like witch Doctors, forever experimenting with the specific individual’s condition.

Our Health system is tied to our financial system. That is the root of it. So long as the doctors, hospitals, and researchers are tied to profit (our financial system) the necessary technology, research, and investment will not be found for those with rare diseases. I have a disease that has no cure. My immune system is attacking the tissue in my mouth. It is sorely painful, personally transformative, and damn if you could find a doctor who is a real expert in the field. Since it is rare, the institutions of the industry will not find proper medicine for its management, let alone its cure. I live with it, and the disease manages the way I eat, what I eat, how I clean my teeth, how I sleep, and interact with my partner too. This disease can transfer to another. Great eh!

For those of you who have or know of someone who has a rare disease, all I can say is to be patient. The present-day financial and healthcare systems need to change drastically, with governmental intervention in all aspects of research, planning, and manufacturing of medicines. Out of the hands who care for themselves, and hopefully into the hands of those who care about you and those you love.

Steven Kaszab
Bradford, Ontario
skaszab@yahoo.ca

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Helping people living with dementia ‘flourish’ through dance

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Dr. Pia Kontos, a Senior Scientist at UHN’s KITE Research Institute, is co-leading an initiative to help people living with dementia flourish. (Photo: Tim Fraser/UHN KITE Studio)

Dr. Pia Kontos believes in the power of the arts to support people to live well with dementia.

The Senior Scientist at UHN’s KITE Research Institute focuses on challenging policies and practices that discriminate against those living with dementia and developing and evaluating arts-based and digital knowledge translation initiatives to reduce stigma, improve social inclusion and quality of care for them.

“The predominant assumption is people living with dementia don’t have the capacity to be creative,” says Dr. Kontos, who is also a professor in the Dalla Lana School of Public Health at the University of Toronto. “However, we know through extensive research that dance…powerfully supports people living with dementia to be creative and to flourish.

“And flourishing should be a goal that we all have.”

Dr. Kontos co-produced in 2023 Dancer Not Dementia, a short documentary film. It captured the power of a dance program for seniors – Sharing Dance Older Adults (SDOA) – to challenge the stigma associated with dementia, support social inclusion and enrich lives. It’s told through the eyes of residents and staff at Alexis Lodge Dementia Care Residence and Cedarhurst Dementia Care Home in Toronto.

SDOA was jointly developed by Canada’s National Ballet School (NBS) and Baycrest Centre in 2013 for older adults with a range of physical and cognitive abilities, including dementia.

Typically, dance programs in dementia care settings are provided as a therapeutic intervention for older adults. However, SDOA’s goal is to provide a creative outlet for participants and opportunities for social interaction with other people living with dementia, staff and loved ones.

Now, Dr. Kontos will look to incorporate traditions from marginalized communities into SDOA through a $750,000 Canadian Institutes of Health Research (CIHR) Institute of Aging Implementation Science Team Grant. Dr. Rachel Bar, Director of Research and Health at NBS is co-principal applicant for the grant.

This CIHR funding supports projects that evaluate the effectiveness of existing programs, services and models of care that show promise for those impacted by cognitive impairment and dementia. An important focus is improving equitable and inclusive access to care and support.

The three-year grant to Drs. Kontos and Bar will support SDOA efforts to partner with organizations in Black, Chinese and South Asian communities to integrate their cultural practices into its programming.

Training dancers from these communities to teach the adapted program is central to these partnerships.

“People living with dementia from marginalized communities rarely have their traditions honoured with art and leisure programming,” says Dr. Kontos.

“It’s important to align dance programs with the cultural traditions of these communities. Otherwise, the music and movements wouldn’t reflect the experiences of ethno-culturally diverse populations, and the programs wouldn’t be inclusive.

“We wouldn’t be supporting their capacity to be creative or to be in relationships with others through dance. We would be falling short.”

SDOA has already partnered with Alexis Lodge, Alzheimer Society of Canada, Baycrest, NBS, Indus Community Services, Social Planning Council of Ottawa, and Yee Hong for this initiative.

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CDC: Heat may have contributed to four human cases of bird flu in Colorado

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Credit: Alexas Fotos from Pexels

Heat probably played a role in at least four cases of bird flu in poultry workers confirmed by U.S. health officials Sunday—the first cases in poultry workers in two years.

Sweltering temperatures in Colorado rose to at least 104 degrees, which is suspected to have contributed to the human cases, according to Dr. Nirav Shah, principal deputy director at the Centers for Disease Control and Prevention. The barns where poultry workers were culling chickens were “no doubt even hotter,” Shah said during a press conference on the most recent outbreak of bird flu in humans.

The new cases bring the U.S. total to at least nine cases since the first human case of the current outbreak was detected in 2022, also in a Colorado poultry worker. Eight of the nine were reported this year.

The workers were separating chickens that were going to be killed to stop the spread of the virus. The fans may also have contributed to the human infections because, while helping to keep the environment cooler, they “also spread things like feathers around which are known to carry the virus,” Shah added.

The large and strong fans also make it difficult for protective goggles and face masks to stay in place, he said.

About 60 workers at the poultry farm showed symptoms of illness and were tested for bird flu. Four tested positive for bird flu and one additional presumptive case is awaiting confirmation.

The illnesses were relatively mild, with symptoms including conjunctivitis and common respiratory infection symptoms like fever, chills, coughing, and runny nose, according to the CDC. None were hospitalized, officials said. The other U.S. cases have also been mild.

Officials said they are bracing for more cases.

The CDC says the risk to the general public remains low and the health agency is not recommending livestock workers be vaccinated against bird flu given the “mild symptoms noted thus far,” Shah said.

An initial analysis of virus samples from an infected poultry worker does not show any changes in the virus that would make it easier to spread among people and there is no evidence of person-to-person spread in the U.S.

“It’s important to note that this assessment is based on what we know today and may change,” Shah said. “CDC is constantly looking for key changes that may alter our risk assessment of the virus, such as the severity of illness that it causes, the ease with which it can transmit to humans or changes to its genetic fingerprint.”

At the request of Colorado’s officials, the CDC sent a 10-person team to Colorado to help the state manage the bird flu outbreak in humans and poultry. The team included epidemiologists, veterinarians, clinicians and industrial hygienists.

Shah also noted it was a bilingual team. Overall in the U.S., it is estimated about half of farm workers are Latino.

An analysis of the virus from an infected worker indicates that the infections at the chicken farm are “largely the same” as the strain detected in dairy herds in Colorado and other states, according to Shah. But an investigation is ongoing to determine exactly how the outbreak is spreading between wild birds, chicken and cattle.

Since 2022, a highly contagious strain of bird flu has spread across the U.S. at an unprecedented rate.

Georgia’s powerhouse poultry industry, which produces more broiler chickens than any other in the country, has mostly dodged the kinds of major outbreaks that have resulted in the deaths of more 90 million birds in commercial and backyard poultry flocks in the U.S.

About 1.8 million chickens will be killed at the Colorado poultry farm after these latest bird flu cases were detected.

In late 2023, ducks at a commercial breeding farm in Sumter County, Georgia, tested positive for H5N1. This year, in March, the virus made a jump to a mammal species that surprised many scientists: cows.

With a significant dairy industry, plus even larger beef and poultry interests, the potential arrival of the virus here threatens Georgia’s economy and the health of residents.

As of Monday, the H5N1 virus has been confirmed in 158 dairy herds in 13 states, according U.S. Agriculture Department.

So far in Georgia, there have been no bird flu cases in cattle, and there have been no human cases.

Since the unprecedented spread of H5N1 in poultry in 2022, the Georgia Department of Public Health has quietly monitored 132 people for signs of the virus, according to DPH spokeswoman Nancy Nydam. Those tracked were either first responders to one of the state’s few virus outbreaks in backyard and commercial poultry flocks or farmworkers where the infections occurred. Of those monitored, fewer than 10 people were tested for H5N1 and none came back positive.

Since the virus was discovered in cattle, a small number of first responders from Georgia who went to other states to help with investigations—fewer than 15—have also been monitored for signs of illness.

Federal officials said Tuesday they still believe they can eliminate the bird flu virus from , even as the number of herds infected continues to grow. The latest state to recently report infected dairy cattle was Oklahoma. North Carolina is the only state adjacent to Georgia to report an infected dairy herd.

Eric Deeble, acting senior adviser for the H5N1 response at the USDA, said investigations show the is spreading among cattle through cattle moved from one herd to another and the shared use of milking equipment. It can be contained through enhanced biosecurity measures such as thoroughly cleaning milking “parlors” and equipment, separating sick cows, and having dairy workers wear protective equipment.

Deeble also noted USDA scientists are also working with partners to develop a cattle-specific H5N1 vaccine—a process requires many steps and will take time.

The USDA is also exploring the possibility of developing a poultry vaccine as the number of cases soar, and outbreaks lead to the slaughter of millions of farmed birds. But USDA and industry stakeholders point to challenges that would hinder a vaccination program.

The biggest sticking point is around trade.

Mike Giles, president of the Georgia Poultry Federation, said mass vaccination would be impractical for several reasons, including the fact that the industry would lose its lucrative export market: The United States and many of its trade partners restrict the import of products or eggs from countries affected by the highly pathogenic strain or flocks that have been vaccinated against it.

“(Bird flu) has been, from an animal health standpoint, our top concern,” Giles said. “The challenge, and I think the industry has responded to it well, has been maintaining the state of preparedness and urgency and focus on biosecurity, and I think that has been accomplished.”

2024 The Atlanta Journal-Constitution. Distributed by Tribune Content Agency, LLC.

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CDC: Heat may have contributed to four human cases of bird flu in Colorado (2024, July 17)
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Here is the new guidance for RSV vaccines

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Health officials recently changed the guidelines for respiratory syncytial virus vaccines. Here’s what Canadians need to know about the guidance and the virus itself.

New guidance on vaccines

As of July 12, the National Advisory Committee on Immunization (NACI) now recommends RSV vaccines for individuals who are 75 years old and older, especially those who have a greater risk of developing severe RSV.

Based on current evidence and expert opinion, NACI said in a news release, it also strongly recommends vaccines for those aged 60 and older who live in nursing homes and other chronic care facilities.

What is RSV?

RSV is a common contagious virus that often causes bronchiolitis, a lung infection, and pneumonia.

Infants face the highest risk of developing severe RSV disease, however, this risk also increases with age and with certain medical conditions, according to the Public Health Agency of Canada (PHAC). It can lead to serious complications for older people, including hospitalization and death.

What are the symptoms?

RSV typically causes mild, cold-like symptoms that usually begin two to eight days after exposure to the virus, according to PHAC.

Those with RSV may experience a runny nose, coughing, sneezing, wheezing, fever and less appetite and energy. Infants may be irritable, have trouble breathing and have less appetite and energy.

What is the treatment?

RSV infections are usually mild and last about one to two weeks. If you are infected, health officials recommend you stay home and limit contact with others.

They also recommend lots of rest and drinking plenty of fluids. Take over-the-counter products, such as acetaminophen or ibuprofen, if you have a fever. Seek immediate care or go to the hospital if you’re having trouble breathing or become dehydrated, PHAC adds.

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