From Medical News Today, By Zawn Villines
How organ transplants work
Many people need an organ transplant due to a genetic condition such as polycystic kidney disease, cystic fibrosis, or a heart defect.
Infections such as hepatitis, physical injuries to organs, and damage due to chronic conditions such as diabetes may also cause a person to require a transplant.
Surgeons performed more than 36,000 organ transplants in 2018, but many more people need organs. In January 2019, more than 113,000 people in the United States were on organ transplant waiting lists. More than 2,000 children need organs.
The transplant process varies slightly depending on the organ, but the need for a matching donor is a consistent theme.
What to expect
In most cases, a person will die if they do not have an organ transplant. On average, 20 people die each day waiting for an organ.
In other cases, an organ transplant improves a person's quality of life, such as by removing the need for dialysis or restoring sight with a cornea transplant.
Because people who need organs typically have very serious illnesses, they may be very sick before the transplant.
The process will begin when a doctor puts a person on the organ transplant list. This requires a doctor to examine the person, diagnose a serious medical condition, and conclude that they are a suitable candidate for an organ transplant.
Organ transplantation is a complex process that requires a close match between the recipient and donor. The donor and recipient must have compatible blood types, for example.
Depending on the organ involved, other factors may also be relevant. For example, kidney donors and their recipients must have compatible antibodies and similar body sizes.
The Organ Procurement and Transplantation Network oversee the transplant waiting list. Somebody's position on the list depends on many factors, including the severity of their illness.
Once a person reaches the top of the waiting list, they will receive a transplant when the next matched donor becomes available.
When an organ is available, the person seeking a transplant must respond quickly to the call from their doctor. Surgery may occur within just a few hours of this call, as organs cannot survive for long outside of the body.
After the transplant, the organ recipient will need to stay in the hospital for a few days as doctors monitor their condition. The length of their hospital stay will depend on various factors, including how well the surgery went and the organ recipient's overall health.
Organ recipients who get sick can become severely ill. Their body may even reject the new organ, so it is important to see a doctor for any signs of infection such as a fever.
Recipients must take anti-rejection medications, as well as other types of medication, to support their long term health. These medications prevent rejection by weakening the immune system, which lowers its ability to fight infections such as the flu, so it is important for the organ recipient to avoid infections.
Statistics
Every day, more than 80 people in the U.S.receive donated organs. Many more need to. According to the U.S. Health Resources and Services Administration, 95% of people in the U.S. support organ donation, but just 58% have signed up to be donors.
A single deceased donor can save up to eight people's lives, as well as improve the lives of more than 100 people by donating tissue.
Myths around organ donation deter some people from donating their organs. The following statements are untrue:
- Doctors work less hard to save the lives of organ donors.
- Organ donation makes it impossible to have an open casket.
- Most religions oppose organ donation.
- Families may have to pay when a loved one donates an organ.
Donating an organ is free and can save or lengthen a person's life. Many people can live long and healthy lives with the help of an organ donor.
How an organ transplant will affect a person's life expectancy varies depending on their age, the organ transplanted, and the reason for the transplant.
Not all transplanted organs last forever. A kidney from a living donor lasts an average of 12–20 years, whereas a kidney from a deceased donor lasts around 8–12 years.
Finding a donor
For people who need an organ, finding a donor may take weeks, months, or longer. There are two legal ways to obtain an organ:
- A person can wait for a donor to become available on the transplant list.
- A person can find their own donor. This is usually a family member or friend of the person who needs a transplant, but some people are willing to donate to people they don't know. Some people even advertise for donors using social media, radio, or billboards.
There are two types of donor:
- Living donors can donate a kidney, a lung, or a portion of the pancreas, liver, or intestines. They must be in reasonably good health.
- Deceased donors can donate two kidneys, two lungs, the heart, pancreas, corneas, and intestines. They may also donate body tissue, such as heart valves, tendons, or skin. Hand and face donation became an option in 2014.
It is illegal to buy or sell organs. However, a 2013 study claims that paying living donors $10,000 for kidneys could increase the rate of organ transplants and save many more lives.
Some nations, including Iran, allow paid organ donation. Sometimes, the system allows wealthy donors to pay much more for organs. This means that people in dire financial situations may be more likely to donate organs, raising concerns that they may sacrifice their health for financial gain.
Benefits
The benefits of an organ transplant depend on the organ a person receives. Some benefits may include:
- avoiding medical procedures such as dialysis
- living a longer life
- living a healthier or less painful life
- gaining an improved quality of life, such as when a cornea transplant restores a person's sight
- correcting congenital disabilities that endanger a person's life
- spending less time in the hospital, needing fewer surgeries, or taking fewer medications
Risks
For almost all organ transplant recipients, the benefits far outweigh the risks.
Most people who need an organ will die or live a much shorter life without a transplant. However, organ transplants are risky surgeries, especially since those who need them often are very ill.
Some risks associated with organ transplant surgery include:
- complications related to the use of anesthesia, including death
- bleeding or other complications during the procedure
- postsurgical complications, such as infection
- a higher risk of infections and other illnesses due to anti-rejection or other transplant-related drugs
- organ rejection
- organ failure
Outlook
The outlook for a recipient depends on the organ they receive, the reason for the transplant, their age, their overall health, and other factors.
Some people may need another organ transplant. A very young kidney recipient, for example, might outlive their organ. Others may live long lives without the need for another organ.
Most people, however, will need ongoing medical care, and they must continue to take anti-rejection drugs.
It is vital to discuss the risks and benefits of organ transplantation with a doctor. Because lifestyle directly affects organ health, including that of transplanted organs, organ recipients should talk with their doctor to get advice on how to lengthen their lives and protect their organs.
Mallika L. Mendu
Breaking Down Health Care Silos
A patient we’ll call Bonnie has been on dialysis for five years, making the difficult trip three times a week to a clinic to sit for hours hooked up to a machine that filters toxins from her blood. Bonnie is 65 and suffers from end-stage renal disease (ESRD), the gradual failure of her kidneys. She has chronically low blood pressure, which complicates the dialysis, and ingests a lot of salt which causes weight gain between treatments. Often, she wakes up breathless and ends up in the emergency department. The ED and dialysis unit don’t have a shared electronic health record, and on discharge there is little communication between the two sites about her care. Nor is there communication between the dialysis unit and her primary care doctor (PCP). When she’s hospitalized, her medications are sometimes changed, but that critical information often doesn’t get back to her many providers. Bonnie is hoping for a kidney transplant, but she doesn’t know where to start, and she has yet to undergo an evaluation to see if she’s eligible.
This type of siloed, uncoordinated ESRD care has serious consequences for Bonnie and thousands of patients like her. On a national level, ESRD takes a huge toll on patients, families and caregivers, and society. Transplants are exceedingly scarce, and so for the vast majority of the 750,000 people affected by ESRD in the US each year, dialysis is the only viable treatment. For patients on dialysis, hospitalization rates and risk of developing related medical problems, and of dying, are high. Finally, while ESRD patients make up less than 1% of the Medicare population, they account for more than 7% of the Medicare budget – a staggering $50 billion annually.
Fragmented care is an important part of the reason for the high costs and utilization and often poor outcomes associated with ESRD. Patients receive care through a patchwork of providers at various sites — outpatient dialysis units, primary care practices, specialty clinics, hospitals and others – which often don’t communicate. Gaps in care are inevitable, and opportunities to intervene before problems arise are often missed.
That’s why in 2016 we launched a coordinated ESRD program within Partners Healthcare, based at Brigham and Women’s Hospital (BWH) in Boston, one of the first to bring the care-coordination principles that are increasingly common in primary care to disease-specific specialty care. While other programs, like the CMS ESRD demonstration projects, have piloted care-coordination models with large dialysis organizations, ours is the only such program that we’re aware of that coordinates care across all stakeholders (dialysis units, hospitals, primary care providers, and others) rather than focusing on care within the dialysis unit itself. Further, unlike other programs, ours extends beyond dialysis-based care to facilitate transplant evaluations and, when needed, palliative care.
At the start of the program, a nurse care coordinator (co-author Diane Goodwin) connected with Brigham and Women’s ESRD patients weekly at four dialysis units, identifying those at risk for deterioration and increased utilization (ED visits and hospitalizations) and implementing strategies to reduce utilization and improve clinical outcomes. These included face-to-face visits to provide self-care education and guidance on avoiding the ED, medication reviews, dialysis-treatment monitoring, tracking immunizations, assuring reliable vascular access, and working with the dialysis unit, visiting nurses, PCPs, specialists and others to coordinate care and assure that all involved had the same information about the patient’s history and status. (Today we have three nurses in this care-coordination role.)
For patients who are admitted to the hospital, a nurse within the program conducts a post-discharge assessment which includes documenting all medications the patient is on, and the dosage, frequency and route, and communicating this and other key information to the patient’s PCPs, the dialysis unit, and others. When patients do go to the ED, a nurse likewise reaches out to the ED team to share information, help guide care and ensure appropriate follow up. Finally, program nurses communicate directly with transplant coordinators to facilitate evaluations and assure that eligible patients are placed on transplant wait lists.
To date, the program has engaged with a total of 100 patients and is currently coordinating care for 54. The results three years out are encouraging. Among these high-risk patients (those who among other indicators have missed treatments, required transfusions, or habitually used the ED for non-urgent issues) we’ve seen on average 5 fewer ED visits or hospital admissions per patient per year than would have been typical before our intervention. Close to one-fifth of the patients in the program have been referred to palliative care, and several who otherwise wouldn’t have received transplants have had them as a result of the program’s enrollment efforts.
By reducing healthcare utilization and facilitating transplantation we’ve thus far saved twice the amount that it costs to run the program. In one slice of the data, we calculated $428,000 in savings from 74 avoided ED visits and 34 avoided admissions, and over $1 million in savings attributable to facilitated transplantations. Feedback from patients and providers has been overwhelmingly positive. In an email, one nephrologist praised the program as a “GREAT addition to ESRD patient care,” citing “improved communication, improved integration of care between providers, [and] avoiding admissions.”
Going forward, we’ll be evaluating the impact of the program on costs and utilization relative to those of a matched control group, and are expanding this work to other Partners hospitals and outpatient dialysis units. Ultimately, as we establish the positive impact of the program and the ability to translate it to other settings within Partners, we hope to disseminate it to other institutions. The goal is a future where silos are broken down in ESRD care delivery and patients, providers, and society share in the benefits.
From WLS-TV, ABC Affiliate, Chicago, By Sara Tenenbaum
Illinois medical marijuana: New qualifying conditions added as program becomes permanent
The list of qualifying conditions for medical marijuana in the state of Illinois has expanded after the General Assembly passed SB 2023, which also makes the state's medical cannabis program permanent.
The bill, sponsored by Rep. Bob Morgan (D-Highwood), operates independently of HB 1438, which legalized recreational marijuana in Illinois.
Morgan, who was also the architect of the Medical Marijuana Pilot Program, said the bill is meant to stabilize and make permanent the medical cannabis program in Illinois. By keeping the program separate from recreational marijuana, it ensures that any future legislative changes to the recreational law do not affect medical patients, including in the case that the recreational marijuana law is ever repealed.
The bill was sent to Governor JB Pritzker to sign on June 12. Morgan said they're still working to set a firm date, he expects Pritzker will sign SB 2023 sometime in the next month.
The Medical Marijuana Pilot program was approved in 2013, began sales in 2015, and was expanded by then-governor Bruce Rauner in 2018. It is considered one of the most restrictive medical programs in the country and was set to expire in July 2020 until SB 2023 passed.
Along with adding new conditions, SB 2023 gives veterans access to medical marijuana through the Opioid Alternative Pilot Program. The 11 new qualifying conditions for medical marijuana patients are: autism, chronic pain, irritable bowel syndrome, migraines, osteoarthritis, anorexia nervosa, Ehler-Danlos Syndrome, Neuro-Behcet's Autoimmune Disease, neuropathy, polycystic kidney disease and superior canal dehiscence syndrome.
The new conditions will be eligible as soon as the Illinois Department of Public Health writes and publishes new rules. A spokesperson for the IDPH's Division of Medical Cannabis said there is currently no set timeline to write and publish the new rules, though they are working to get them drafted as quickly as possible.
Rep. Morgan said the rule writing and publishing process typically takes about 90 days and is comprised of a period of public comment and then legislative review.
There are 55 medical marijuana dispensaries currently operating in Illinois, and more licenses are expected to be issued in 2020. Medical marijuana patients are also the only people who can cultivate marijuana plants at home under the recreational law. Patients will be able to grow up to five plants, which Morgan said most benefits rural patients who live far away from dispensaries. He said that medical patients will also have first-in-line access to marijuana and marijuana products in case of a supply shortage after recreational use begins next year.
For more information on medical marijuana in Illinois and how to get patient card if you have a qualifying condition, click here.
This type of siloed, uncoordinated ESRD care has serious consequences for Bonnie and thousands of patients like her. On a national level, ESRD takes a huge toll on patients, families and caregivers, and society. Transplants are exceedingly scarce, and so for the vast majority of the 750,000 people affected by ESRD in the US each year, dialysis is the only viable treatment. For patients on dialysis, hospitalization rates and risk of developing related medical problems, and of dying, are high. Finally, while ESRD patients make up less than 1% of the Medicare population, they account for more than 7% of the Medicare budget – a staggering $50 billion annually.
Fragmented care is an important part of the reason for the high costs and utilization and often poor outcomes associated with ESRD. Patients receive care through a patchwork of providers at various sites — outpatient dialysis units, primary care practices, specialty clinics, hospitals and others – which often don’t communicate. Gaps in care are inevitable, and opportunities to intervene before problems arise are often missed.
That’s why in 2016 we launched a coordinated ESRD program within Partners Healthcare, based at Brigham and Women’s Hospital (BWH) in Boston, one of the first to bring the care-coordination principles that are increasingly common in primary care to disease-specific specialty care. While other programs, like the CMS ESRD demonstration projects, have piloted care-coordination models with large dialysis organizations, ours is the only such program that we’re aware of that coordinates care across all stakeholders (dialysis units, hospitals, primary care providers, and others) rather than focusing on care within the dialysis unit itself. Further, unlike other programs, ours extends beyond dialysis-based care to facilitate transplant evaluations and, when needed, palliative care.
At the start of the program, a nurse care coordinator (co-author Diane Goodwin) connected with Brigham and Women’s ESRD patients weekly at four dialysis units, identifying those at risk for deterioration and increased utilization (ED visits and hospitalizations) and implementing strategies to reduce utilization and improve clinical outcomes. These included face-to-face visits to provide self-care education and guidance on avoiding the ED, medication reviews, dialysis-treatment monitoring, tracking immunizations, assuring reliable vascular access, and working with the dialysis unit, visiting nurses, PCPs, specialists and others to coordinate care and assure that all involved had the same information about the patient’s history and status. (Today we have three nurses in this care-coordination role.)
For patients who are admitted to the hospital, a nurse within the program conducts a post-discharge assessment which includes documenting all medications the patient is on, and the dosage, frequency and route, and communicating this and other key information to the patient’s PCPs, the dialysis unit, and others. When patients do go to the ED, a nurse likewise reaches out to the ED team to share information, help guide care and ensure appropriate follow up. Finally, program nurses communicate directly with transplant coordinators to facilitate evaluations and assure that eligible patients are placed on transplant wait lists.
To date, the program has engaged with a total of 100 patients and is currently coordinating care for 54. The results three years out are encouraging. Among these high-risk patients (those who among other indicators have missed treatments, required transfusions, or habitually used the ED for non-urgent issues) we’ve seen on average 5 fewer ED visits or hospital admissions per patient per year than would have been typical before our intervention. Close to one-fifth of the patients in the program have been referred to palliative care, and several who otherwise wouldn’t have received transplants have had them as a result of the program’s enrollment efforts.
By reducing healthcare utilization and facilitating transplantation we’ve thus far saved twice the amount that it costs to run the program. In one slice of the data, we calculated $428,000 in savings from 74 avoided ED visits and 34 avoided admissions, and over $1 million in savings attributable to facilitated transplantations. Feedback from patients and providers has been overwhelmingly positive. In an email, one nephrologist praised the program as a “GREAT addition to ESRD patient care,” citing “improved communication, improved integration of care between providers, [and] avoiding admissions.”
Going forward, we’ll be evaluating the impact of the program on costs and utilization relative to those of a matched control group, and are expanding this work to other Partners hospitals and outpatient dialysis units. Ultimately, as we establish the positive impact of the program and the ability to translate it to other settings within Partners, we hope to disseminate it to other institutions. The goal is a future where silos are broken down in ESRD care delivery and patients, providers, and society share in the benefits.
The bill, sponsored by Rep. Bob Morgan (D-Highwood), operates independently of HB 1438, which legalized recreational marijuana in Illinois.
Morgan, who was also the architect of the Medical Marijuana Pilot Program, said the bill is meant to stabilize and make permanent the medical cannabis program in Illinois. By keeping the program separate from recreational marijuana, it ensures that any future legislative changes to the recreational law do not affect medical patients, including in the case that the recreational marijuana law is ever repealed.
The bill was sent to Governor JB Pritzker to sign on June 12. Morgan said they're still working to set a firm date, he expects Pritzker will sign SB 2023 sometime in the next month.
The Medical Marijuana Pilot program was approved in 2013, began sales in 2015, and was expanded by then-governor Bruce Rauner in 2018. It is considered one of the most restrictive medical programs in the country and was set to expire in July 2020 until SB 2023 passed.
Along with adding new conditions, SB 2023 gives veterans access to medical marijuana through the Opioid Alternative Pilot Program. The 11 new qualifying conditions for medical marijuana patients are: autism, chronic pain, irritable bowel syndrome, migraines, osteoarthritis, anorexia nervosa, Ehler-Danlos Syndrome, Neuro-Behcet's Autoimmune Disease, neuropathy, polycystic kidney disease and superior canal dehiscence syndrome.
The new conditions will be eligible as soon as the Illinois Department of Public Health writes and publishes new rules. A spokesperson for the IDPH's Division of Medical Cannabis said there is currently no set timeline to write and publish the new rules, though they are working to get them drafted as quickly as possible.
Rep. Morgan said the rule writing and publishing process typically takes about 90 days and is comprised of a period of public comment and then legislative review.
There are 55 medical marijuana dispensaries currently operating in Illinois, and more licenses are expected to be issued in 2020. Medical marijuana patients are also the only people who can cultivate marijuana plants at home under the recreational law. Patients will be able to grow up to five plants, which Morgan said most benefits rural patients who live far away from dispensaries. He said that medical patients will also have first-in-line access to marijuana and marijuana products in case of a supply shortage after recreational use begins next year.
For more information on medical marijuana in Illinois and how to get patient card if you have a qualifying condition, click here.
From Healio
Over the next 2 years, the PKD Foundation will invest almost $5 million into studies focused on treating and curing polycystic kidney disease, according to a press release.
“For the past 36 years, our goal has been to support PKD patients from care to cure. With the support of generous donations, we have the ability to stand beside PKD patients until there is a cure, supporting research for new treatments and to support researchers,” Andy Betts, CEO of the PKD Foundation, said in the release
Growing interest from the PKD research community has enabled the foundation to increase funding and award grants and fellowships yearly, rather than biannually, for the first time since 2009.
In 2019, the foundation funds more than 30 researchers, the largest number of awards given in a single year in the foundation’s history.
The PKD Foundation has awarded nearly $50 million to grants, fellowships, awards and scientific meetings since its establishment in 1982.
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