Patients with Cystic Fibrosis Survive Longer in Canada than in the U.S.

New research reveals startling survival gap between Canadians and Americans with genetic disease, raises questions about how to improve care
cystic fibrosis in lungs

Credit: www.medicalnewstoday.com

A new study published in the Annals of Internal Medicine and reported by Fox News shows that Canadians with cystic fibrosis live up to 10 years longer than Americans who have the same illness. The study, funded by the United States Cystic Fibrosis Foundation, suggests that access to lung transplants and health insurance might play a role in the differing survival rates.

Currently more than 30,000 Americans and 70,000 people around the world are living with cystic fibrosis. The disease is a genetic illness that is contracted by inheriting defective genes from both parents. Cystic fibrosis sufferers experience a build-up of mucus in the lungs that makes them prone to fatal respiratory infections and respiratory failure. Thick mucus also blocks the flow of enzymes important to digestion, which interferes with the absorption of nutrients.

girl with Cystic fibrosis

Credit: www.slideshare.net

Thanks to earlier diagnosis and improvements in treatments, more children are surviving into adulthood and middle age. This is a huge feat coming from just decades ago when sick children rarely survived elementary school.

But researchers who analyzed data from national cystic fibrosis registries in each country from 1990 to 2013 report that median survival for an American with the disease is 41 years of age. The median survival for a Canadian is 51 years.

Dr. Anne Stephenson of St. Michael’s Hospital in Toronto, who led the study, claims that “these statistics are sobering.”

Drs. Patrick Flume of the Medical University of South Carolina and Donald VanDevanter of Case Western Reserve University wrote in an accompanying editorial that the findings mark “a hard reality we must accept.”

“Now we are faced with the more difficult task of trying to identify and implement solutions to bridge the survival gap,” they said.

Differing Approaches to Care

But why does the survival gap exist at all? According to doctors and other researchers, it may be due to differences in the two nations’ health care systems. But there are other possible causes, such as the higher proportion of Canadian patients who receive a life-prolonging lung transplant (10.3%) compared to American patients (6.5%).

medical care

Credit: www.securelink.com

Canada also adopted better nutritional care for children with cystic fibrosis in the 1970s, a decade before the United States. This leans toward the difference likely affecting survival only among older age groups.

Survival rates for Americans with private health insurance mirrored those of Canadians, who have universal health coverage. However, U.S. patients on Medicaid, which also provides access to sophisticated CF treatment centers, did not live as long. Dr. Bruce Marshall of the Cystic Fibrosis Foundation believes that poverty plays a large role in that disparity. “Even with Medicaid, it’s still hard to take time off work, find child care and travel to a clinic,” he said.

Survival gap aside, there is still no cure for cystic fibrosis. “We’re about finding the best care wherever it is and trying to understand, if Canada’s got better outcomes, how do they do that so we can copy it,” said Dr. Marshall.

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“I have two luxuries to brood over in my walks: your loveliness and the hour of my death. O that I could have possession of them both in the same minute.”

- John Keats
Walking can lead to profound thoughs

Credit: maxmicheelsen.com

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Scientists Discover Gene That Determines How Fast Your Brain Will Age

The effects of TMEM106B kick in once a person reaches the age of 65
illustration of brain regions in colors

Credit: upi.com

A new study conducted by Columbia University Medical Center Researchers and published this week in the journal Cell Systems identifies a gene that seemingly dictates how fast a brain ages.  The gene, called TMEM106B, begins to effect the brain once a person reaches the age of about 65, and may modify the risk of neurodegenerative diseases.  

Variants of TMEM106B affect aging in the frontal cortex, the region of the brain responsible for higher mental processes such as language, memory and decision making. Researchers found that people who have two ‘bad’ copies of TMEM106B have a frontal cortex that looks 10 to 12 years older than people of the same age who have two working copies of the gene. 

“If you look at a group of seniors, some will look older than their peers and some will look younger,” said Dr. Asa Abeliovich, co-author of the study and professor of pathology and neurology at the Taub Insistitue for Alzheimer’s Disease and the Aging Brain at CUMC.  The same differences in aging can be seen in the frontal cortex.” Until the age of 65, says Dr. Abeliovich, “everybody’s in the same boat, and then there’s some yet-to-be-defined stress that kicks in. If you have two good copies of the gene, you respond well to that stress. If you have two bad copies, your brain ages quickly.”    

brain and clock

Credit: dana.org

To carry out the study, Drs. Abeliovich and Herve Rhinn, PhD, analyzed genetic data from autopsied human brain samples collected from 1,904 different people not affected by neurodegenerative diseases. The researches examined the transcriptomes (initial products of gene expression) taken from their samples. This created a composite picture of the average brain biology of people at a given age. The researchers then compared each person’s transcriptome with the average transcriptome of people at the same age. The researchers focused on about 100 genes whose expression increases or decreases with aging. 

Different Rates of Brain Aging Seen

From this information, scientists formulated a measure they called “differential aging” — the difference between a person’s apparent (biological) brain age and their chronological brain age. TMEM106B stood out as a genetic driver of differential aging. It seemingly controls the brain’s levels of inflammation and neuronal loss. One form of the gene is associated with increased brain aging. The other form is protective, preventing the acceleration of aging in the brain. 

According to study co-author Dr. Rhinn, who is an assistant professor of pathology and cell biology at the Taub Institute, the TMEM106B genetic variant is very common. “About one-third of people have two copies and another third have one copy,” said Dr. Rhinn. “From what we could see, the effect of the [TMEM106B] risk allele is additive, in the sense that the brain of elderly people with two copies of the risk allele ‘looks’ five years older than the [brains] of people with only one copy of risk allele. And [they] themselves ‘look’ five years older than people with no risk allele.” 

As a result of the study’s findings, TMEM106B has the potential to be a new biomarker for assessing the need for anti-aging interventions in susceptible individuals. Researchers may also begin targeting TMEM106B in attempts to create treatments that decelerate brain aging.

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Monday Hearts for Madalene

Page Hodel creates beautiful hearts as a tribute to enduring love
handmade heart with red and yellow flowers

Red roses for my one and only love

It’s an honor for SevenPonds to share with our readers the story of the Monday Hearts for Madalene project, a true account of the power of love in the midst of death.The project’s origins take us to 2005: the moment Page Hodel encountered Madalene Rodriguez and fell “instantly, dizzyingly in love with her.” The couple’s first meeting was electric, and Page felt inspired to do something unique for the woman who captured her heart. So, she began leaving handmade hearts – made from flowers, leaves, and other materials – on Madalene’s doorstep.  The hearts became a ritual, and they were there to greet Madalene as she left for work every Monday.

“To start her week with a visual reminder of our beautiful love.” Page Hodel

Just seven months later, Madalene was diagnosed with ovarian cancer and passed away on June 20th, 2006. But Page’s love for her hasn’t ceased, and she continues to make a heart for her every Monday in celebration of her life.

If you would like, you can also receive Page’s “Monday Hearts for Madalene” by emailing her at page.hodel@gmail.com with “subscribe” written as the subject. Images of the hearts can also be purchased  in her beautifully compiled book, Monday Hearts for Madelene. Please also visit her website and Facebook  page. A portion of all sales will go to the Women’s Cancer Resource Center in Oakland, California (www.wcrc.org). See more Monday Hearts for Madalene here.

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Coping with Grief in Vibrant Color

An artist deals with the loss of a child
Seth Remsnyder's painting, with black, green, pink and purple tubes weaving around the canvas and onto the wall,

Credit: Seth Remsnyder

On April 8, 2014, artist Seth Remsnyder had to say goodbye to his son, Robert Langdon Remsnyder. His child was stillborn. And although he and his wife Janet knew ahead of time that their son had died in the womb, the pain was still shocking.

To handle his grief, Remsnyder started to paint. The result is a series of colorful, chaotic and stunning scenes that change the way we think about coping with grief.

When you think about coping with grief through art, you likely picture a grey scene devoid of any saturated color or burning passion. Many of these scenes are dull and muted, mimicking the depression that can overcome those who have experienced loss.

However, there’s an energy to grief that few artists manage to capture. Remsnyder succeeds beautifully in this subtle expression of passion. His art showcases the frustration, anger and intense love that comes from losing a loved one, especially losing a child at such a young age. He isn’t afraid to make bright colors part of his story.

Some of the pieces in his series break away from the canvas as a symbol of the messiness of grief. Remsnyder is literally thinking outside of the box with his work. Going through the trauma of loss often feels like you’re having to forge a new path of your own. Where it will take you is uncertain, but you know that by the end of the process, you’ll never be the same person you once were. Remsnyder’s work captures this feeling in the winding paths and interlocking tubes that weave around the canvas.

Seth Remsnyder's painting, with green, white and yellow tubes at the top, and jagged lines in the same color at the bottom his way of coping with grief

Credit: Seth Remsnyder

Texture plays a massive role in this series as well. In one of his pieces, Remsnyder fills the top of his canvas with round tubes that look as though they’d be right at home in a Dr. Seuss book. As your eye moves down the canvas, however, the tubes become jagged and sharp. There’s a feeling of chaos in the lower half of the painting. This piece in particular sparks an emotional reaction in the viewer. It takes the audience from a state of serenity and throws them into a disorienting frustration.

At first, the bright colors don’t seem as though they fit into Remsnyder’s narrative about coping with grief. Yet as you take in these paintings one-by-one, you see that the vibrant colors are absolutely essential to the work. There are moments of darkness in these paintings. But the brighter colors cut through this dark chaos just as hope and love cut through the pain of grief. His paintings show that even in the darkest moments, there are still brighter moments to be found.

Seth Remsnyder explains that he wanted to create art that captured people’s attention. The bright colors and bold shapes hook the audience into the work, allowing them to absorb it fully. Remsnyder says, “As far as viewers are concerned, my desire is that they get lost in the canvas, that they find each piece to be a place to set down their baggage, if you will.”

Sometimes, as you’re coping with grief, you need permission to feel those overwhelming emotions that many people suppress in daily life. Seth Remsnyder’s work gives you the space you need to feel fiery anger, gushing love and turbulent mania. His art is pure catharsis on canvas.

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Is Alkaline Hydrolysis Good for the Environment?

An interview with Philip Olson, Part Two

Today, SevenPonds speaks with Philip Olson, an assistant professor of Science and Technology in Society at Virginia Tech. Olson researches bioethics and environmental ethics, analyzing society’s complex relationship with new technologies. He has a particular interest in the study of alkaline hydrolysis. Over the years, Olson has studied how receptive people are to this new technology. 

Warning: This post contains detailed information about how remains are processed. Reader discretion is advised. 

A portrait of professor Philip Olson

Credit: sts.vt.edu

Marissa Abruzzini: What type of energy does alkaline hydrolysis use? 

Philip Olson: You just plug it in. It’s all run on electricity through a hot water heater.

Marissa: Is the energy requirement for alkaline hydrolysis less than that of standard cremation? 

Philip: It’s much, much, much less than cremation. Here’s the thing though: Your energy bill will be low, but your water bill will go through the roof. Alkaline hydrolysis uses a lot of water. You have to fill the entire cylinder up with water twice or even three times every day. And if you’re using this in a place like southern California, you’re gonna run into some issues. There’s been a lot of water rationing happening there.

Drinkable water is a serious security issue. Alkaline hydrolysis isn’t this panacea for the funeral industry.

Marissa: Do you personally consider alkaline hydrolysis to be ecologically safe? 

Philip: I can’t give a definitive answer for this. I will say that it uses a lot less energy than cremation. But at the same time, alkaline hydrolysis still uses electricity that comes from a coal power plant. You’re using less fossil fuels than you are with a standard cremation, but you’re also using a lot more water. The ecological impact depends on the seriousness of those interests. You have to consider which is the more pressing issue at the moment.

Marissa: On the subject of environmental safety, one of the problems with standard cremation is that dental fillings can burn, and the mercury inside gets released into the air. What happens to dental fillings in alkaline hydrolysis? 

A man holding a pacemaker, which doesn't have to be removed during alkaline hydrolysis

Credit: Wikimedia.org
You don’t need to remove pacemakers in alkaline hydrolysis.

Philip: Teeth don’t hydrolyze — they’re part of the bone matter that’s left behind. But the fillings inside of the teeth won’t hydrolyze either. Fillings fall off of the teeth because the teeth become very brittle at the end of the process. All of these fillings and implants come out completely clean. You don’t even have to remove pacemakers, which is something you have to do with cremation. At the end of the alkaline hydrolysis process, all of these implants are filtered out before the bones dry.

Marissa: When did alkaline hydrolysis become a legal tool for decomposing human remains? Is this a relatively new process? 

Philip: The first time was in Ohio in 2011. A funeral director named Jeff Edwards heard about this process for decomposing animal remains. He noticed that there weren’t any regulations in his state that said he couldn’t use this for human remains. He presented it to the board in his state, and just started doing it. Within a short period of time, he processed 19 bodies with this method. What’s so interesting to me is that he received a ton of interest, even though he only used it for a few months. But, just before he did his 20th round of alkaline hydrolysis, the Ohio Board of Health shut him down.

Marissa: Why do you think they shut him down?

Philip: Some people think alkaline hydrolysis sounds awful. They compare it to Soylent Green.

Marissa: Since alkaline hydrolysis is legal in some states, people are clearly interested in it. Why do people choose this method over cremation?

Philip: The vast majority of people choose this process not because it’s greener than cremation, but because they think it’s more gentle. They get the same end product that cremation produces (the “ashes”) without the fire. Fire for many people conjures up visions of hell. So instead of putting grandma on a fire, grandma is taking a warm bath. I guess they think it’s gentler to soak in caustic alkali.

Marissa: How do you feel about the funeral industry calling this process “flameless cremation?” Is this accurate? 

Alkaline hydrolysis machine

An alkaline hydrolysis machine
Credit: frazerconsultants.com

Philip: I compare this debate to the debate over whether same-sex marriage is really “marriage.” We assume that cremation means that you need to have flames or fire. In reality, cremation is just a legal definition for processing remains. Like marriage, it’s a socially constructed definition. You end up with the exact same end product in both cremation and alkaline hydrolysis. And you’re not really getting “ashes” in either process. But the important issue for me is how the state chooses to legalize it. If it’s not “cremation,” then will they regulate it differently? That’s the question I care about.

Marissa: Why do some people have a difficult time accepting alkaline hydrolysis, even though they readily accept cremation? 

Philip: People get metaphysical about this issue. It reveals a lot about our death care culture. We have this desire to make new technology feel more familiar and more natural. People used to say the same things about cremation that they’re saying now about alkaline hydrolysis. What’s funny is that neither of these things are what actually happens to a body in the ground. There’s nothing “natural” about either of them.

Marissa: Would you consider using this process yourself after you die? 

Philip: It interests me, but ideally, I’d like to have a green burial. I see the manipulation of bodies as unnecessary. But if my family really wanted cremation or alkaline hydrolysis, then that’s fine. And I would just ask that they understand the water security issue, and our use of nonrenewable fossil fuels. Alkaline hydrolysis isn’t immune to criticism.

If you’d like to find out whether alkaline hydrolysis is legal and available in your state, you can find more information on Nolo.com

You can read Part One of our interview with Philip Olson here

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