Tag Archives: alpha 1

ALPHA-1 is coming to town and Harrison Silverdale’s BB has them!

Alpha-1 is coming to town! Silverdale to be exact – in the Rose Room at Harrison Silverdale to be more exact – 1:00pm to 3:00pm and we are all excited.

Mark Wednesday, 21 September 2011 for Better Breather’s partnering with Alpha-1 and Free Testing for the Alpha-1, a genetic component of Emphysema (COPD)

“American Thoracic Society (ATS) Guidelines

ATS guidelines recommend testing a broad range of patients with lung conditions:1

All adults with symptomatic emphysema regardless of smoking history

All adults with symptomatic COPD regardless of smoking history

All adults with symptomatic asthma whose airflow obstruction is incompletely reversible after bronchodilator therapy

Asymptomatic patients with persistent obstruction on pulmonary function tests with identifiable risk factors (smoking, occupational exposure, etc.)

Consider testing of asymptomatic individuals with persistent airflow obstruction without risk factors (no smoking or no known occupational exposure, etc.)”

The speaker is Nancy Bartholomew, with Prolastin-C from Grifols Inc.

I have included this photo taken from ATS “Rare Lung Diseases” because seeing it broke my heart. It shows a ‘mother and her baby poignantly illustrating the fact that young women can be the victim of rare lung diseases.”

If we do not test, we cannot know and could easily be misdiagnosed and medically treated for the wrong condition.

… taken from American Thoracic Society (ATS) online “Some of the most exciting discoveries in pulmonary medicine have come from studying rare diseases. Insights gained from uncommon lung diseases often shed light on more common lung diseases…” http://www.thoracic.org/education/breathing-in-america/index.php

Web sites of interest

National Institutes of Health Rare Diseases Clinical Research Network

www.rarediseasesnetwork.org

Orphanet – About Rare Diseases

www.orpha.net/consor/cgi-bin/Education_AboutRareDiseases.php?Ing=EN

LAM Foundation

www.thelamfoundation.org

Hermansky-Pudlak Syndrome Network

www.hermansky-pudlak.org

Tuberous Sclerosis Alliance

www.tsalliance.org

Look for a table and chairs set up and friendly Harrison folks…Joyce is the RRT Harrison volunteer Better Breathers liaison…we are lucky to have her.

Rose Room – Harrison Silverdale

1800 NW Myhre Road – Silverdale, WA 98383

Better Breathers Support Group

“Our Better Breathers support group encompasses community members and their caregivers who live with chronic respiratory disease and lung disease. Better Breathers is designed to provide support, education, networking, and tools to improve the daily lives of those living with these health conditions.

We welcome any community member with asthma, emphysema, chronic bronchitis, sarcoidosis, asbestosis, pulmonary hypertension, pulmonary fibrosis and the many more lung diseases affecting our population, pediatric or adult.

Please email or call if you will need assistance with parking at the meeting.”

Contact: Pamela O’Flynn – 360-744-6687 – respiratorycare@harrisonmedical.org

If anyone needs a ride, contact me.

Thanks for reading… Sharon O’Hara

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COPD Research Study at Leicester University – New Hope for Future

Sharon O'Hara

It is about time! The Leicester University researcher, Prof Chris Brightling, Wellcome Senior Research Fellow is leading a team on a five year EU quest to – ultimately – individualize the COPDer treatment. Currently, we’re pretty much given the same inhalers to help open our airways for better breathing and most COPD inhalers were developed for asthma patients – quite different from
Chronic Obstructive Pulmonary Disease. (COPD)

I’ve taken many different inhalers over the years, none worked well – for me – as my present three inhalers.

For example, I’ve been on the same inhalers about five years – nothing newer or better has been developed and approved for use in the United States. The last new inhaler I’ve taken for COPD was initially an incredible boost to my lungs. The 24-hour inhaler, Spiriva, recommended to take in the morning was so powerful for me I took it at night and every morning was able to exercise three hours or so before breakfast and taking my other inhalers. Not everyone has the same reaction and some don’t take it for various reasons – we’re all different. This is the first time we’ve had research into our differences and I applaud and thank them on behalf of future COPDers.

These days I take it in the morning as time and COPD march on.

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“A Leicester University researcher is leading an international team in the development of a tool to help tailor the treatment of asthma and chronic obstructive pulmonary disease (COPD).

Prof Chris Brightling, Wellcome Senior Research Fellow at Leicester University and an honorary consultant based at Glenfield Hospital, is spearheading the five-year EU project, dubbed AirPROM.

According to Leicester University, the project will create computed and physical models of the whole airways system, to help scientists and doctors predict how patients might react to different treatments.

Damaged, inflamed or obstructed airways are common in people with COPD and asthma, which makes breathing difficult. The current methods to detect and treat these conditions do not always consider individual differences in the airways that make each person unique. As a consequence, people with these conditions may not receive the most effective treatment.

While scientists are working on more advanced, targeted approaches to treatment, they have been unable to match these treatments to the right patients and explain the reasons behind this.

The AirPROM research team will make a computed model of the cells in an airway and a physical model of the airways, to assess how air flows through the lungs and why it becomes obstructed in people with asthma and COPD.

By using these unique models, along with existing data from tests that measure lung capacity and highly detailed X-rays, known as CT scans, the scientists will be able test new therapies, which will enable them to tailor treatments to the individual.

The aim is to use this information to generate an extensive database that will be able to link the characteristics of different airways to a particular treatment in the future, helping health professionals provide personalized treatment for people with COPD and asthma.

These tools will also help scientists predict how the diseases will progress and the effect on the airways, to help monitor the future risk to patients.

Breda Flood, a patient with asthma and board member of European Federation of Allergy and Airways Diseases Patients Association, said: ‘This new model will help us to visualize activity in our lungs and see how our illness affects our breathing. By gaining an insight into how specific treatments will work, patients will have a better understanding of how to manage their condition in the future.’”

http://www.theengineer.co.uk/sectors/medical-and-healthcare/news/project-seeks-better-treatment-for-breathing-disorders/1008723.article

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Interesting – We have EFFORTS (Emphysema Foundation For Our Right To Survive): http://www.emphysema.net and Alpha 1, the inherited type of COPD: http://www.alpha-1foundation.org/

The United States does not have a ‘Federation of Allergy and Airways Diseases Patients Association’ that I know about.

Thanks for reading… Sharon O’Hara

New Bird at the Feeder – Yesterday – New Hope for COPDers – Today

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$150,000. Yearly Lung Drug for One Patient. P.S. Does It Work?!

Sharon O'Hara

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?

Xxxxxxxxxxxxxxx

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

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Why Pay $150,000 Year for a Lung Drug if it Does Not Work?

Sharon O'Hara

The Apha 1 group comprises about 10% of COPDers but they are the group who has made great organizational strides in bringing public awareness to COPD (Chronic Obstructive Pulmonary Disease)
They are politically astute and I like most of the folks I’ve met in the organization.

That said… the idea of paying $150,000. a year per person for a drug that, at best, does nothing for the patient is OUTRAGEOUS!

There is little to no research being done for regular COPDers…if this study is accurate, why can’t we use that wasted $150,000. Per patient for RESEARCH?

Roll the drug manufactures out of the profit at any cost bed and use the money where it will do the most good for the most people.
Why not?!

I am including the following verbatim for obvious reasons.

Wasted drug dollars? NO!
Research dollars for the COPD majority benefit? YES!

“Pricey lung disease drugs have no benefit: study

URL of this page: http://www.nlm.nih.gov/medlineplus/news/fullstory_100767.html (*this news item will not be available after 10/04/2010)

Tuesday, July 6, 2010
By Kate Kelland
LONDON (Reuters) – Recommendations for expensive treatments made for a genetic disorder called alpha-1 antitrypsin deficiency should be withdrawn because the drugs have no benefit, scientists said on Wednesday.

The disorder causes chronic lung disease and researchers who reviewed data from two trials on 140 patients with it found no evidence that alpha-1 antitrypsin medicines — made by various drugmakers including Talecris, Kamada, CSL and Baxter — do any good.

Based on this evidence, the researchers said the treatment, which costs up to $150,000 a year in the United States, should not be recommended by doctors and advocacy groups.

“The drug has not shown any clinical benefit, is extremely costly and has important adverse effects,” said lead researcher Peter Gotzsche of the Nordic Cochrane Center at Rigshospitalet in Copenhagen, Denmark.

“In view of the lack of evidence and high cost of treatment, treating alpha-1 antitrypsin deficiency by replacement therapy cannot be recommended.”

According to the team, whose work was published in The Cochrane Library journal, recommendations by the American Thoracic Society and European Respiratory Society that promote alpha-1 antitrypsin replacement are “misguided”.

“Both societies recommend augmentation therapy for patients with breathing problems related to alfa-1 antitrypsin deficiency. In our opinion, these recommendations are not reasonable,” said Gotzsche.

Alpha-1 antitrypsin deficiency affects less than one in 1,600 people. Those who inherit the disorder have low levels of the protein alpha-1 antitrypsin, also called alpha-1 proteinase inhibitor, which protects the tissue of the lungs from destruction by the body’s own white blood cells.

At a relatively young age, this can result in symptoms of emphysema, including shortness of breath and wheezing.

The aim of alpha-1 antitrypsin replacement therapy is to give the patient back the protective protein they are missing. This should limit damage to lungs and, ultimately, prevent early death. The protein is usually extracted from blood donated by healthy volunteers.

The researchers reviewed data from two trials involving a total of 140 people with the disorder, all of whom were at a high genetic risk of developing chronic lung disease.

In one trial, patients were given intravenous alpha-1 antitrypsin or a placebo every four weeks for three years and in the other, the treatment or a placebo was given weekly for a minimum of two years.

There was no difference between treatment and control groups in terms of exacerbations of lung disease, or quality of life, the researchers found. Combining the results from the trials, Gotzsche’s team also found no evidence of a clinically important effect on lung function.

“Indeed the results suggested modest harm, or at best no effect,” they wrote in their study. They added that while the treatment might cause a reduction in the deterioration of lung appearance on CT scan, it was “not clear whether this is a clinically meaningful difference.”

http://www.nlm.nih.gov/medlineplus/print/news/fullstory_100767.html

More later… Sharon O’Hara

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