We have a nice update to a post from a few weeks ago. The post is found here. Basically, the family of 3 YO girl, Amelia Rivera, understood after meeting with their physician that their daughter was being denied a kidney transplant because of her "mental retardation."
CBSNews reported here that The Children's Hospital of Philadelphia issued a joint statement with Amelia's family that "as an organization, we regret that we communicated in a manner that did not clearly reflect our policies or intent and apologize for the Riveras' experience." Amelia's parents said in the joint statement that "despite an unfortunate encounter a few weeks ago, we hold The Children's Hospital of Philadelphia in high regard. Our hope is that this experience will heighten the medical community's sensitivity to and support for the disabilities community."
Let's hope that a suitable donor kidney is found for little Amelia expeditiously and that the transplant goes as smoothly as possible.
Kudos to everyone who inundated the hospital with comments and complaints which surely helped encourage them to get their act together and not to deny a transplant to one of the most vulnerable members of our society.
Tuesday, February 21, 2012
Friday, February 10, 2012
Raising Awareness for Live Donor Kindey Donations through Social Media
How can the power of social media and multimedia be utilized to increase live donor kidney donations?
Some random thoughts...
1. A youtube channel where people who need a kidney tell their story to the world in hopes of finding an altruistic donor.
2. A reality show about the apprehension and angst of an individual and their family as they wait on the kidney transplant waiting list hoping to get a kidney before it is too late.
3. A reality show/youtube channel dedicated to following a person on dialysis who then gets a transplant and compare the drama relating to the transplant surgery and also to compare their (quality of) life before and after the transplant.
4. There already is a twitter feed to monitor all things related to ESRD and kidney transplantation here. Dr. Robert Hickey, a great hero and advocate for all things related to kidney transplants, constantly tweets all types of info and links to articles related to ESRD (fyi, he also tweets strong political stuff there so you'll either hate it, love it, or you can ignore it.)
Anyone else have suggestions???
Dr. Hickey's comment:
Robert F. Hickey, Ph.D.Feb 17, 2012 12:04 PM
We would be well served by implementing every option available to encourage human organ transplants as long as they are legal and ethical. However, unbelievably, there are those, individuals and so-called non-profits, doing evrything they can to discourage patients from advocating for themselves. More on that issue below.
A reality show focusing on the frustration, anguish, and fear of patients waiting for organ transplants and their families would be extremely revealing. CBS attempted to bring a weekly show, Three Rivers, to the audience. It didn't catch on!
The show was set, ironically enough in Pittsburgh, considered by some to be ground zero in the transplant world. It also happens to be the town where the University of Pittsburgh kidney transplant center was recently shut down. Patients were given contaminated organs. The show was stilted and not a reflection of what actually happens from a patient/family perspective.
The transplant establishment has engaged in unfair and unethical efforts to minimize the impact of social networking by patients to find living donors. This week I received 2 calls from patients who were told they could not get kidney transplants if they found donors through www.matchingdonors.com or any other such Internet site!
Two weeks ago, Dr. F. Coors, at University of Colorado made a public statement indicating that social network sites were dangerous because you never know what you're getting. Nonsense! A prospective donor and Transplant recipient will go through 6 to 9 months of testing and intrusive interviews before any transplant will be approved. I've been through along with my donor in 2004.
Some transplant centers claim they will accept prospective donors who are identified through social media while not being sincere about their intentions. This happened this week to 2 patients at Cedars-Sinai in LA. Both presented with altruistic, non-related, living donors for kidney transplants. One was told Cedars transplant team would not accept any donor without insurance. The other was told no donor who had to travel to the hospital would be accepted. First, in the case of kidney transplants, Medicare/Medicaid will pay living donor medical expenses. This includes any medical issue arising from the transplant for several years. Many recipients also have private insurance in partnership with the government coverage. Secondly, there is no valid or ethical reason to disqualify a prospective donor based on where they live within the USA. These are smoke screens.
The point is, we can do all we can to promote organ donation. However, if the powers that be in the transplant industry don't stop erecting manufactured hurdles to transplantation, nothing is going to help. The so-called non-profit structure of the US transplant system is a complete sham. UNOS and the 58 Organ Procurement Organizations across the country and their managers have become millionaires on the monopolistic system they control. When that monopoly is broken innovation will come and the transplant waiting list will be resolved within 24 months.
As long as we have Organ Procurement Organizations making $50 million to $140 million annually on procurement fees, organ sales prices, the system will not change! As long as executives at UNOS and the OPO are being paid $500,000.00 to $700,000.00 per year, the system will not chgange.
Some random thoughts...
1. A youtube channel where people who need a kidney tell their story to the world in hopes of finding an altruistic donor.
2. A reality show about the apprehension and angst of an individual and their family as they wait on the kidney transplant waiting list hoping to get a kidney before it is too late.
3. A reality show/youtube channel dedicated to following a person on dialysis who then gets a transplant and compare the drama relating to the transplant surgery and also to compare their (quality of) life before and after the transplant.
4. There already is a twitter feed to monitor all things related to ESRD and kidney transplantation here. Dr. Robert Hickey, a great hero and advocate for all things related to kidney transplants, constantly tweets all types of info and links to articles related to ESRD (fyi, he also tweets strong political stuff there so you'll either hate it, love it, or you can ignore it.)
Anyone else have suggestions???
Dr. Hickey's comment:
Robert F. Hickey, Ph.D.Feb 17, 2012 12:04 PM
We would be well served by implementing every option available to encourage human organ transplants as long as they are legal and ethical. However, unbelievably, there are those, individuals and so-called non-profits, doing evrything they can to discourage patients from advocating for themselves. More on that issue below.
A reality show focusing on the frustration, anguish, and fear of patients waiting for organ transplants and their families would be extremely revealing. CBS attempted to bring a weekly show, Three Rivers, to the audience. It didn't catch on!
The show was set, ironically enough in Pittsburgh, considered by some to be ground zero in the transplant world. It also happens to be the town where the University of Pittsburgh kidney transplant center was recently shut down. Patients were given contaminated organs. The show was stilted and not a reflection of what actually happens from a patient/family perspective.
The transplant establishment has engaged in unfair and unethical efforts to minimize the impact of social networking by patients to find living donors. This week I received 2 calls from patients who were told they could not get kidney transplants if they found donors through www.matchingdonors.com or any other such Internet site!
Two weeks ago, Dr. F. Coors, at University of Colorado made a public statement indicating that social network sites were dangerous because you never know what you're getting. Nonsense! A prospective donor and Transplant recipient will go through 6 to 9 months of testing and intrusive interviews before any transplant will be approved. I've been through along with my donor in 2004.
Some transplant centers claim they will accept prospective donors who are identified through social media while not being sincere about their intentions. This happened this week to 2 patients at Cedars-Sinai in LA. Both presented with altruistic, non-related, living donors for kidney transplants. One was told Cedars transplant team would not accept any donor without insurance. The other was told no donor who had to travel to the hospital would be accepted. First, in the case of kidney transplants, Medicare/Medicaid will pay living donor medical expenses. This includes any medical issue arising from the transplant for several years. Many recipients also have private insurance in partnership with the government coverage. Secondly, there is no valid or ethical reason to disqualify a prospective donor based on where they live within the USA. These are smoke screens.
The point is, we can do all we can to promote organ donation. However, if the powers that be in the transplant industry don't stop erecting manufactured hurdles to transplantation, nothing is going to help. The so-called non-profit structure of the US transplant system is a complete sham. UNOS and the 58 Organ Procurement Organizations across the country and their managers have become millionaires on the monopolistic system they control. When that monopoly is broken innovation will come and the transplant waiting list will be resolved within 24 months.
As long as we have Organ Procurement Organizations making $50 million to $140 million annually on procurement fees, organ sales prices, the system will not change! As long as executives at UNOS and the OPO are being paid $500,000.00 to $700,000.00 per year, the system will not chgange.
Subscribe to:
Posts (Atom)