Welcome to Duke Lung Transplant Friends
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Diane Detmer
Website designed, published and maintained by Diane Detmer
Contact Webmaster: dinki@charter.net
Diane Detmer
Website designed, published and maintained by Diane Detmer
Contact Webmaster: dinki@charter.net
Dr. David Zaas writes letter to transplant patients and caregivers
Communication is one of the keys to any success!
As your webmaster and website owner I am taking the liberty to write this personal statement to you.
Since my husband and I came to Duke in 2005 for his lung transplant we were often frustrated because of the lack of adequate communication from the transplant team.
Beginning with Dr. Palmer's letter in July announcing his return to lung transplant research and the appointment of Dr. Zaas as the new Medical Director, to the letter and Coordinator and Clinic changes has been a refreshing, much appreciated, and much needed change in the transplant program at Duke.
The 2005 Spring/Summer group of transplant patients was one of the largest single groups of transplant patients Duke has had at one time. We became a rather close group of patients and families and many of us still keep in touch. During that time, one of the biggest frustrations we all had in common was communication from the transplant team. Communication about where the individual patients stood in their listing, insurance coverage/approval and coordination of appointments, clinic, medication, caregiver education and support, how the system works, changes in program.
I am certain that the entire Duke lung transplant community would give the Duke Transplant Team a hearty round of applause in appreciation if we could. We all hope that this kind of communication continues and improves. There are many keys on the key ring to success and communication is a big important key on that ring.
Click here to read the Letter from Dr. Zaas
Click here to read the Coordinator/Clinic changes
New Non-Profit Organization ~ Lung Transplant Foundation
May 19, 2008
Dr. Scott Palmer, Medical Director - Duke Lung Transplant Program to step down.
Duke Lung Transplant patients are receiving a rare communication from the Duke Lung Transplant Team this week announcing that Dr. Palmer is stepping down as Medical Director of the Duke Lung Transplant Program to pursue his ongoing interest in Lung Transplant research. The Duke Lung Transplant program is growing at a fast pace, making it more and more difficult for Dr. Palmer to continue his lung transplant research. Dr. Palmer will continue to see patients in clinic and with hospital rounds. Dr. Zaas will step into the role of Medical Director of the Duke Lung Transplant Program. Patients are encouraged to contact the Duke Lung Transplant Office to ask any questions or concerns.
Click here to read Dr. Palmer's letter
April 12, 2008
FDA Investigates CellCept for cause Neurological Disease
Dear Duke Lung Transplant Friends;
The following article was posted on the Second Wind discussion group yesterday. It has been copied here because of it's significance and importance to the transplant community as a whole. If Cellcept and/or Myfortic are part of your medication regime, contact the transplant team to discuss the matter.
The Associated Press Published: April 10, 2008
WASHINGTON: Regulators are exploring whether organ transplant drugs made by
Roche and Novartis increase the risk of an often-fatal neurological disease.
The Food and Drug Administration said Thursday it has identified 16 cases of
patients developing the rare neurological ailment while taking Roche's drug
CellCept, which is used to avoid rejection in organ transplant patients.
U.S. regulators approved CellCept in 1995.
The Swiss drug maker Roche alerted regulators to the issue last November.
FDA said it is looking into similar risks with Myfortic, a drug made by
fellow Swiss drugmaker Novartis that includes the same key ingredient as
CellCept.
The agency said it will take about two months to review the reports and
approve new labeling for the medications. Until then, regulators advise
doctors and patients to watch for symptoms of neurological problems.
The disease, known as progressive multifocal leukoencephalopathy, attacks
the brain and central nervous system and is usually fatal. Symptoms include
vision problems, loss of coordination and memory loss. Patients who survive
are often permanently disabled, according to the FDA.
Roche has independently confirmed 10 cases of the disease in CellCept
patients, according to company spokesman Christopher Vancheri. He added that
the drug has been used by an estimated 500,000 patients worldwide.
CellCept was Roche's sixth best-selling drug last year with sales of $1.99
billion (€1.25 billion).
Roche submitted new labeling for CellCept last November which the FDA is
still reviewing.
European regulators have already added language about the disease to
CellCept. In February, Roche sent a letter to European doctors, highlighting
the changes. The letter said problems were reported in kidney, heart and
lung transplant patients. The disorder was also seen in patients taking the
drug for a form of lupus, a use that is not approved by regulators.
Roche said that it is difficult to sort out the role of its drug in the
reports, since many patients had other diseases and were taking other drugs.
"However, the contributory role of CellCept cannot be excluded," states the
letter, which FDA posted to its Web site Thursday.
A spokeswoman for Novartis said the company plans to cooperate with any
labeling changes recommended by regulators.
FDA said it has not received any reports of the disease with Myfortic, which
was approved in 2004.
Communication is one of the keys to any success!
As your webmaster and website owner I am taking the liberty to write this personal statement to you.
Since my husband and I came to Duke in 2005 for his lung transplant we were often frustrated because of the lack of adequate communication from the transplant team.
Beginning with Dr. Palmer's letter in July announcing his return to lung transplant research and the appointment of Dr. Zaas as the new Medical Director, to the letter and Coordinator and Clinic changes has been a refreshing, much appreciated, and much needed change in the transplant program at Duke.
The 2005 Spring/Summer group of transplant patients was one of the largest single groups of transplant patients Duke has had at one time. We became a rather close group of patients and families and many of us still keep in touch. During that time, one of the biggest frustrations we all had in common was communication from the transplant team. Communication about where the individual patients stood in their listing, insurance coverage/approval and coordination of appointments, clinic, medication, caregiver education and support, how the system works, changes in program.
I am certain that the entire Duke lung transplant community would give the Duke Transplant Team a hearty round of applause in appreciation if we could. We all hope that this kind of communication continues and improves. There are many keys on the key ring to success and communication is a big important key on that ring.
Click here to read the Letter from Dr. Zaas
Click here to read the Coordinator/Clinic changes
New Non-Profit Organization ~ Lung Transplant Foundation
May 19, 2008
Dr. Scott Palmer, Medical Director - Duke Lung Transplant Program to step down.
Duke Lung Transplant patients are receiving a rare communication from the Duke Lung Transplant Team this week announcing that Dr. Palmer is stepping down as Medical Director of the Duke Lung Transplant Program to pursue his ongoing interest in Lung Transplant research. The Duke Lung Transplant program is growing at a fast pace, making it more and more difficult for Dr. Palmer to continue his lung transplant research. Dr. Palmer will continue to see patients in clinic and with hospital rounds. Dr. Zaas will step into the role of Medical Director of the Duke Lung Transplant Program. Patients are encouraged to contact the Duke Lung Transplant Office to ask any questions or concerns.
Click here to read Dr. Palmer's letter
April 12, 2008
FDA Investigates CellCept for cause Neurological Disease
Dear Duke Lung Transplant Friends;
The following article was posted on the Second Wind discussion group yesterday. It has been copied here because of it's significance and importance to the transplant community as a whole. If Cellcept and/or Myfortic are part of your medication regime, contact the transplant team to discuss the matter.
The Associated Press Published: April 10, 2008
WASHINGTON: Regulators are exploring whether organ transplant drugs made by
Roche and Novartis increase the risk of an often-fatal neurological disease.
The Food and Drug Administration said Thursday it has identified 16 cases of
patients developing the rare neurological ailment while taking Roche's drug
CellCept, which is used to avoid rejection in organ transplant patients.
U.S. regulators approved CellCept in 1995.
The Swiss drug maker Roche alerted regulators to the issue last November.
FDA said it is looking into similar risks with Myfortic, a drug made by
fellow Swiss drugmaker Novartis that includes the same key ingredient as
CellCept.
The agency said it will take about two months to review the reports and
approve new labeling for the medications. Until then, regulators advise
doctors and patients to watch for symptoms of neurological problems.
The disease, known as progressive multifocal leukoencephalopathy, attacks
the brain and central nervous system and is usually fatal. Symptoms include
vision problems, loss of coordination and memory loss. Patients who survive
are often permanently disabled, according to the FDA.
Roche has independently confirmed 10 cases of the disease in CellCept
patients, according to company spokesman Christopher Vancheri. He added that
the drug has been used by an estimated 500,000 patients worldwide.
CellCept was Roche's sixth best-selling drug last year with sales of $1.99
billion (€1.25 billion).
Roche submitted new labeling for CellCept last November which the FDA is
still reviewing.
European regulators have already added language about the disease to
CellCept. In February, Roche sent a letter to European doctors, highlighting
the changes. The letter said problems were reported in kidney, heart and
lung transplant patients. The disorder was also seen in patients taking the
drug for a form of lupus, a use that is not approved by regulators.
Roche said that it is difficult to sort out the role of its drug in the
reports, since many patients had other diseases and were taking other drugs.
"However, the contributory role of CellCept cannot be excluded," states the
letter, which FDA posted to its Web site Thursday.
A spokeswoman for Novartis said the company plans to cooperate with any
labeling changes recommended by regulators.
FDA said it has not received any reports of the disease with Myfortic, which
was approved in 2004.
Duke Lung Transplant Friends News