Crystal Evans has been worried about bacteria growing inside the silicone tubes that connect her windpipe to the ventilator that pumps air into her lungs.
Before the pandemic, the 40-year-old woman with progressive neuromuscular disease followed a strict routine: She carefully replaced the plastic circuits that deliver air from the ventilator five times a month to maintain sterility.She also changes the silicone tracheostomy tube several times a month.
But now, these tasks have become infinitely difficult.A shortage of medical-grade silicone and plastic for the tubing meant she only needed a new circuit every month.Since running out of new tracheostomy tubes early last month, Evans boiled anything she had to sterilize before re-use, took antibiotics to kill any pathogens that might have missed, and hoped for the best. result.
“You just don’t want to risk infection and end up in the hospital,” she said, fearing she might be exposed to a potentially deadly coronavirus infection.
In a very real sense, Evans’ life has been held hostage to supply chain disruptions caused by the pandemic, exacerbated by the demand for these same materials in busy hospitals.These shortages present life-and-death challenges for her and millions of chronically ill patients, many of whom are already struggling to survive on their own.
Evans’ situation has gotten worse recently, for example when she contracted a potentially life-threatening tracheal infection despite all the precautions she took.She is now taking an antibiotic of last resort, which she receives as a powder that must be mixed with sterile water – another supply she has difficulty getting.”Every little thing is like that,” Evans said.”It’s on many different levels and everything is eroding our lives.”
Complicating the plight of her and other chronically ill patients is their desperate desire to stay away from the hospital because they fear they could contract the coronavirus or other pathogens and suffer serious complications.However, their needs receive little attention, partly because their isolated lives make them invisible, and partly because they have too little buying leverage compared to large healthcare providers such as hospitals.
“The way the pandemic is handled, many of us are starting to wonder — don’t people care about our lives?” said Kerry Sheehan of Arlington, Massachusetts, a suburb north of Boston, who has been dealing with a shortage of intravenous nutritional supplements , which allowed her to suffer from connective tissue disease that made it difficult to absorb nutrients from food.
In hospitals, doctors can often find substitutes for unavailable supplies, including catheters, IV packs, nutritional supplements, and medications such as heparin, a commonly used blood thinner.But disability advocates say getting insurance to cover alternative supplies is often a long struggle for people managing their care at home, and not having insurance can have serious consequences.
“One of the big questions throughout the pandemic is what happens when there isn’t enough of something desperately needed, as COVID-19 puts more demands on the health care system?” said Colin Killick, executive director of the Disability Policy Coalition. The coalition is a Massachusetts-run civil rights advocacy organization for people with disabilities.”In every case, the answer is that disabled people enter nothingness.”
It’s hard to know exactly how many people with chronic illnesses or disabilities living alone, rather than in groups, could be affected by supply shortages caused by the pandemic, but estimates are in the tens of millions.According to the Centers for Disease Control and Prevention, 6 out of 10 people in the U.S. have a chronic disease, and more than 61 million Americans have some kind of disability — including limited mobility, cognitive, hearing, vision, or the ability to live independently.
Experts say medical supplies are already stretched thin due to supply chain disruptions and increased demand from hospitals overwhelmed by COVID-19 patients in some parts of the country for months.
Some medical supplies are always in short supply, said David Hargraves, senior vice president of supply chain at Premier, who helps hospitals manage services.But the scale of the current disruption dwarfs anything he’s experienced before.
“Typically, there can be 150 different items backordered in any given week,” Hargraves said.”Today the number is over 1,000.”
ICU Medical, the company that makes the tracheostomy tubes used by Evans, conceded that shortages could place a “huge additional burden” on patients who rely on intubation to breathe.The company said it was working to correct supply chain issues.
“This situation is exacerbated by an industry-wide shortage of silicone, the primary raw material for the production of tracheostomy tubes,” company spokesman Tom McCall said in an email.
“Substance shortages in health care are nothing new,” McCall added.”But pressures from the pandemic and current global supply chain and freight challenges have exacerbated them – both in terms of the number of products and manufacturers affected, and the length of time that shortages have been and will be felt. ”
Killick, who suffers from motor dysgraphia, a condition that causes difficulties with the fine motor skills needed to brush teeth or write with handwriting, said that in many cases during the pandemic, it is more difficult for people with disabilities or chronic illnesses to access supplies and medical care, Because of the increased public demand for these things.Earlier, he recalled how patients with autoimmune diseases struggled to meet their hydroxychloroquine prescriptions because, despite a lack of evidence that it would help, many others use the drug to prevent or treat Covid-19 Virus.
“I think it’s part of the larger puzzle of people with disabilities being seen as not worthy of resources, not worthy of treatment, not worthy of life support,” Killick said.
Sheehan said she knows what it’s like to be marginalized.For years, the 38-year-old, who considered herself non-binary and used the pronouns “she” and “them” interchangeably, struggled to eat and maintain a steady weight as doctors struggled to explain why she was losing weight so rapidly .5’7″ and weighed down to 93 lbs.
Eventually, a geneticist diagnosed her with a rare inherited connective tissue disorder called Ehlers-Danlos syndrome — a condition exacerbated by injuries to her cervical spine after a car accident.After other treatment options failed, her doctor instructed her to get nutrition at home through IV fluids.
But with thousands of Covid-19 patients in intensive care units, hospitals are starting to report shortages of intravenous nutritional supplements.As cases surged this winter, so did an important intravenous multivitamin that Sheehan uses every day.Instead of taking seven doses a week, she started with just three doses.There were weeks when she only had two of the seven days before her next shipment.
“Right now I’ve been sleeping,” she said.”I just didn’t have enough energy and I still woke up feeling like I wasn’t resting.”
Sheehan said she has started to lose weight and her muscles are shrinking, just like before she was diagnosed and started receiving IV nutrition.”My body is eating itself,” she said.
Her life in the pandemic has also gotten harder for other reasons.With the mask requirement lifted, she is considering skipping physical therapy to preserve muscle function even with limited nutrition — because of the increased risk of infection.
“It would make me give up the last few things I was holding on to,” she said, saying she had missed family gatherings and visits to her beloved niece for the past two years.”Zoom can only support you so much.”
Even before the pandemic, 41-year-old romance novelist Brandi Polatty and her two teenage sons, Noah and Jonah, were regularly in Jefferson, Georgia. isolation from others at home.They are extremely tired and have trouble eating. Sometimes they feel too sick to work or go to school full-time because a genetic mutation prevents their cells from producing enough energy.
It took doctors years to use muscle biopsies and genetic testing to confirm they had a rare disease called mitochondrial myopathy caused by a genetic mutation.After much trial and error, the family discovered that getting nutrients through a feeding tube and regular IV fluids (containing glucose, vitamins and other supplements) helped clear brain fog and reduce fatigue.
To keep up with life-changing treatments, between 2011 and 2013, both mothers and teenage boys received a permanent port in their chest, sometimes called a centerline, that connects the catheter to the IV bag from the The chest is connected to veins close to the heart.The ports make it easier to manage IV fluids at home because the Borattis don’t have to hunt for hard-to-find veins and push needles into their arms.
Brandi Poratti said that with regular IV fluids, she was able to avoid hospitalization and support her family by writing romance novels.At 14, Jonah is finally healthy enough to have his chest and feeding tube removed.He now relies on oral medication to manage his disease.His older brother, Noah, 16, still needs an infusion, but feels strong enough to study for GED, pass, and go to music school to learn guitar.
But now, some of that progress is threatened by pandemic-induced constraints on the supply of saline, IV bags and heparin that Polatty and Noah use to keep their catheters clear of potentially deadly blood clots and avoid infections.
Typically, Noah receives 5,500ml of fluid in 1,000ml bags every two weeks.Due to shortages, the family sometimes receives the liquids in much smaller bags, ranging from 250 to 500 milliliters.This means replacing them more frequently, increasing the chance of introducing infections.
“It doesn’t seem like a big deal, right? We’ll just change your bag,” Brandi Boratti said.”But that fluid goes into the centerline, and the blood goes to your heart. If you have an infection in your port, you’re looking for sepsis, usually in the ICU. That’s what makes the centerline so scary.”
The risk of centerline infection is a real and serious concern for people receiving this supportive therapy, said Rebecca Ganetzky, an attending physician in the Frontiers Program in Mitochondrial Medicine at Children’s Hospital of Philadelphia.
The Polatty family is one of many mitochondrial disease patients facing tough choices during the pandemic, she said, because of shortages of IV bags, tubes and even formula that provides nutrition.Some of these patients cannot do without hydration and nutritional support.
Other supply chain disruptions have left people with disabilities unable to replace wheelchair parts and other facilities that allow them to live independently.
Evans, a Massachusetts woman who was on a ventilator, did not leave her home for more than four months after the wheelchair access ramp outside her front door rotted beyond repair and had to be removed in late November.Supply issues have pushed material prices beyond what she can afford on a regular income, and her insurance offers only limited help.
As she waited for the price to drop, Evans had to rely on the help of nurses and home health aides.But every time someone entered her home, she feared they would bring the virus in – although she was unable to leave the house, assistants who came to help her were exposed to the virus at least four times.
“The public doesn’t know what many of us are dealing with during the pandemic, when they want to go out and live their lives,” Evans said. “But then they’re spreading the virus.”
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Post time: Jun-28-2022