When is COPD not COPD?
Why does a special group measuring only 1% of all COPDers (4th
leading cause of death in the U.S), get a drug costing $150,000.
Per patient, per year and ongoing research. while the other 99% of
COPDers get – nothing.in research dollars?
A regular COPDer should pray they turn into one of the 1% group
– because there is help out there for that 1% COPD.
The two national COPD support groups were organized and are run by
the same 1% group of COPDers. – alpha-1 folks..
Why the discrepancy in treatment interest by a leading respiratory
hospital?
COPDers…it is NOT OKAY that a small group of us gets research
dollars into real treatments for their COPD (keeps their FEV1 from
dropping the study disproved)
The fact is my FEV1 numbers stayed the same for years WITHOUT a
$150,000 drug.
We seem to be funding this gross negligent misuse of public
funds on a small group of folks while nothing is helping the other
99% of us….no research.
National Jewish is the leading respiratory hospital in the
country and has been for 12 years.
I went to their website and looked up the different statements re:
alpha-1 and regular COPD.
I then called National Jewish to ask them to tell me what –
specifically- they are doing for COPDers…the other 99%. They –
literally – had nothing to say. I listened to silence until I
quietly put down my phone.
I will ask again. Why the emphasis on research for the 1%
group?
Okay – I will ask. If alpha-1 is genetic – is the majority of
the people who have it Jewish?
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Alpha-1 Antitrypsin Deficiency Program
Alpha-1 Antitrypsin Deficiency (sometimes shortened to Alpha-1)
is a hereditary condition that can cause liver disease in infants,
children, and adults and can also lead to lung disease in
adults.
National Jewish Health is one of the best places in the world to
be treated for the adult lung and liver disease caused by Alpha-1.
Our doctors have every necessary tool at their fingertips to
diagnose and treat this condition. While we do not treat infants or
children with Alpha-1 liver disease, we have a close working
relationship with The Children’s Hospital in Denver and will make a
referral to the appropriate pediatric liver specialist.
Alpha-1 is one of the most common inherited disorders and
accounts for about 1 percent of all COPD (chronic obstructive lung
disease) in the United States. Research is constantly being done to
develop new therapies. Doctors at National Jewish Health have been
involved in virtually every new drug evaluated for Alpha-1.
Currently trials are underway or planned to evaluate inhaled
therapies and gene therapy for the condition. Our doctors and
researchers are always looking for new ways to manage and treat
Alpha-1 and other chronic lung diseases.
Doctors at National Jewish Health follow one of the largest
groups of Alpha-1 patients in the world. The program here has been
devoted to the care of families with Alpha-1 since 1981.
Since Alpha-1 is a genetic condition, we invite all immediate
family members to participate in the initial visit, if
possible.
“http://www.nationaljewish.org/programs/directory/alpha-1-antitrypsin.aspx
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COPD Program
The COPD Program offers comprehensive, individualized care for
people with chronic obstructive pulmonary disease (COPD) including
emphysema and chronic bronchitis.
As the region’s only full-service program, our goal is to help
patients manage their disease effectively and to live full and
active lives.
The COPD Program offers:
• Unique, collaborative approach proven to enhance quality of
life.
• Personalized care plan and individualized take-home binder for
every patient.
• Cutting edge diagnostic testing and latest treatments for
COPD.
• Nutritional counseling.
• Specialized pulmonary and physical rehabilitation programs.
• Personalized education and group classes.
• Behavioral health and psychosocial services.
• Evaluation for potential lung volume reduction surgery (LVRS) and
lung transplant.
Dedicated Team of Experts
The COPD program team of specialists are dedicated to the goal of
helping people with COPD “take charge” of their breathing and
regain or maintain control of their lives. We are here to partner
with you to manage your lung disease in the best way possible.
People with COPD can lead active and full lives.
At each visit, you will meet with physicians and/or nurse
practitioners who are experts in the field of COPD.
A comprehensive personal COPD plan will be created. This plan will
help you manage your COPD, with a focus on maximizing your
respiratory health through education, rehabilitation, nutrition and
medications. We will consider any other medical conditions or
special needs you may have, and you will have appointments with
other healthcare professionals. They will address medical and
lifestyle issues that impact your quality of life.
http://www.nationaljewish.org/programs/directory/copd/index.aspx
More later… Sharon O’Hara
