COPD -The Cure is in Stem Cell Research

Sugarcoating and the Evasion of Reality: by Jim Anderson

“Continue using your medications as directed and come back to see me in six months.”

I’ve been a COPD (emphysema) patient for over six years and that simple statement about sums up my
standard visit to the pulmonologist (I’ve had three of them, so I think it’s fair to conclude that they’re
representative of the field). Every once in a while, following a periodic pulmonary function test, that line
will be preceded by “your numbers are down a bit since your last PFT, but that’s a typical progression of
your condition. Continue taking your medications, blah, blah, blah.”

My brother was struck by Type I diabetes at the age of 14. They told him, “Take your insulin faithfully,
be very strict with your diet and you can go on to live a full, happy and normal life.” Becoming a
physician himself, he managed his disease meticulously and faithfully. He was dead at the age of 39,
following a long and slow systemic degradation that included failed eyesight and kidneys. Official cause
of death: hyperkaelemia. Yeah, right.

It’s been observed that many health care practitioners perceive a patient’s death (and/or dying) to be a
failure of their art/craft/magic/science and do their best to disassociate themselves from it, rather than
dealing with it as a normal progression; as an integral facet of their profession to handle, to continue
treating and assisting the patient to the end. They seem to prefer to “hand off the ball” like a dirty
bedpan. With our disease of COPD, most often by the time they’ve exhausted their toolbox of
bronchodilators, anti-inflammatories, systemic steroids, MDI’s, etc., the patient is in hospice care
receiving palliative measures. The pulmonologist is no longer even in the picture. Which is probably
exactly the way he prefers it. He doesn’t want to be a part of the “failure.” To make matters even worse,
many COPD patients don’t even realize that theirs is a terminal disease simply because their physicians
shy away from being honest and forthright about it.

“The relative neglect of end of life care until recently may be due, in part, to death being viewed as a
failure in medical care, rather than inevitable. It is a duty and privilege to be able to provide
compassionate and effective care from diagnosis to death.” This is from Anna Spathis and Sara Booth in
“End of life care in chronic obstructive pulmonary disease: in search of a good death.”* This article is
well worth reading, and it should be an eye-opener for health care practitioners and patients alike. (They
write of the UK, but things aren’t so very much different here.)

There seems to be a different kind of failure in the general public’s perception of COPD. Somehow, the
reality of it being a fatal disease is not generally perceived or acknowledged, let alone appreciated. We
see our happy ads on TV for Spiriva® and Advair®, with people playing with grandchildren and
blowing bubbles, bowling, bicycling, golfing, leading normal happy lives and always smiling. It’s
curious that none of them are shown using oxygen. Where’s the patient in rehab gasping like a beached
fish while clinging to the rails of a treadmill? Where’s the patient bringing in his groceries with a
flushed face, heaving chest and bulging eyeballs? Where’s the patient taking a break midway up a flight
of stairs, trying to regain more normal breathing before continuing? Where’s the patient in hospice
wearing a full oxygen facemask and whose eyes, if open at all, are glazed by the narcotic effects of
morphine? Where’s the patient who gasps for breath in mid-sentence, completely winded from simply
mumbling a few words? You know, the one for whom the word “outside” is a place where OTHER
people go?

Have you ever seen any such happy ads for, let’s say, chemotherapy? Even in our daily lives, our family, friends and neighbors don’t see us as dying because we’re doing it so slowly, so gradually. They don’t notice that we’re huffing and puffing much worse than last year with the exact same exertion. It happened gradually. They don’t know that our exercise sessions are so much harder on us as time goes on, even though we’re on the exact same regimen. It happened gradually. (I used to run errands and go grocery shopping after pulmonary rehab; now I go home and collapse and take a three or four hour nap instead, because I’m completely spent. Over several months, this has evolved from being an occasional practice to a regular one.) I expend more resources for the same work.

They can’t understand or imagine the dread we feel before taking a shower (if we even tell them at all,
that is, how hard it is to breathe while we’re in there, even with oxygen; and how it’s one task that we
simply can’t stop in the middle and set aside for later completion – you have to finish this one, there’s
no other way around it). I have a friend and neighbor who looks at me askance when I’m not wearing
my cannula and asks why I’m not using it. (I respond, of course, that sometimes I don’t need it while
I’m at rest, if my oxygen saturation, pulse and my shortness-of-breath cooperate.) He shakes his head in
silent reproach when he rings my doorbell and sees that I’ve been taking a nap in the middle of the day.
He scowls slightly when he spots my ongoing household projects collecting dust, rather than showing
the daily progress that a “normal” person would. He hasn’t actually said anything of the sort, but I’m
guessing that he thinks I’m just plain lazy, and possibly a faker and/or a hypochondriac as well. He is
one of those that just don’t understand. And he’s far from alone in that respect.

For whatever reason, COPD patients just don’t get the same regard as, say, a cancer patient, even though
our disease is MUCH more likely to result in an inevitable death. The word “remission” is not in our
lexicon; nor is the word “benign.” Maybe there’s a lack of drama, excitement or immediacy about us.
Maybe it’s because, until now, we didn’t even stand the wisp of a chance of a real honest-to-goodness
CURE (or remission), so why bother fretting about it? (No, I don’t know if there’s a cure even now, but
at least now we have an option – a possibility — that wasn’t available until recently, i.e., stem cell
treatments) We all know the color of a cancer ribbon. What’s the color of a COPD ribbon? As I write
this, I haven’t got a clue myself if such a thing even exists.

Just to keep things straight here, this is not written in some attempt to evoke sympathy. And when I talk
about getting attention, I don’t mean the kind of attention that a kid (or perhaps a hypochondriac) craves.
I’m referring to raising both public and professional awareness of what exactly is going on here. Let’s
bring COPD out of the darkness and into the spotlight. This is currently the fourth leading cause of
death, predicted soon to be the third. Patients should be outraged, their friends and relatives should be
outraged and by golly, it’s time for our medical practitioners to get mad and get on board in demanding
change and progress. And demanding that the wayward FDA get back on track and once again start
serving the public interest. The FDA is not on my side when my breathing meds alone cost $400 a
month. The FDA is not on my side when it takes years to approve medications that are already in
common use elsewhere (the rest of the world had Spiriva® for two years before the FDA approved it for
use in the U.S.). We’ve been hearing about roflumilast for over six years now. Where is it? And how
much will it cost once it’s approved (as it most certainly will be and we all know it)? The FDA is not on
my side when it denies me – a terminal patient with nothing to lose and everything to gain — access to
experimental drugs and procedures. The FDA is not on my side when it places itself squarely in the way
of stem cell treatments and research. The FDA is not on my side when it tries to claim exclusive control
of the very cells within my own body and dictate how I am allowed to use them (and nonchalantly
violates my most basic civil rights and constitutionally protected liberty interests in doing so). The FDA
is not on my side when it perceives Big Pharma to be its client, rather than the American citizen.

My doctor is not on my side when he tells me to take my medications and shut up already. He is not on
my side when he tells me that the only option I have left is to put my name on the transplant list. He is
not on my side when he tells me what a bother it is to try to get special access to experimental
medications. He doesn’t even have the nerve to simply prescribe everyday medications for off-label
usage. (And lest anybody recommend that I just go out and get a new doctor, be aware that I’d be
looking at a minimum 400-mile round trip for the privilege, on each and every visit.)

Where am I going with this diatribe? I honestly haven’t got a clue. Perhaps I’m just venting, but
hopefully I’m putting out some information and insight to those who don’t already have it. People don’t
really “see” us except to notice our oxygen tanks and our “nose hoses.” Perhaps I can open up some eyes
to the reality of what’s happening in our part of the world that many haven’t ever really seen, and that
some simply choose not to see. But I do know that I’m tired of being a medical second-class citizen in
the eyes of the FDA, doctors, friends and the general public alike. I do know that it’s foolish to ignore
the realities and pretend that all is well if only we just take our meds as directed. I do know that I want
action when it comes to research in every conceivable branch of science, a serious examination of all
avenues and possibilities.

I do know that I want the FDA to start working for my best interests instead of against them. I want people to understand why the fledgling science of stem cell therapy is so much more attractive to me than spending a year away from home in order to get my guts eviscerated and rearranged, followed by a lifetime of gulping gobs of horse pills and fleeing from germs. (I know I really shouldn’t knock transplantation because it must necessarily remain as my ultimate fallback option.)

I haven’t given up on me and I don’t expect medicine or science to give up on me either. While discussing my upcoming stem cell treatment, one of my pulmonary nurses made a comment to the effect that “I don’t think I’d want to live forever,” as if to imply that immortality was somehow my goal. I still feel that this comment was a bit flippant (possibly even snide) and that it trivialized the nature of my disease and the question at hand. (Would she have made the same remark to a chemotherapy or a bypass patient?) I answered, quite simply, “No, I’m not trying to live forever. I only want to live long enough to die of SOMETHING ELSE.”

To date, there are only just a few select stem cell procedures that have been approved for use in the U.S.
by the FDA. The one I need is not among them, and I think it is just plain all wrong that a terminal
patient like me (once again, with nothing to lose and everything to gain) is forced to leave the country
for a week (and incur many thousands of dollars in costs, not to mention the strain on my limited
stamina) to get my treatment, which could be easily be performed in a matter of hours on an outpatient
basis, possibly covered by Medicare and/or private insurance. The approval of procedures aside, the
FDA has now – in a rather underhanded and sneaky fashion – taken the position that a person’s own
stem cells will be classified and regulated as drugs (with the multitude of regulations and procedures that
go along with that)!

On a most basic level, this is overstepping their authority by trespassing into the realm of medical practice. Furthermore, it is in direct opposition to constitutionally protected liberty interests. The FDA (more heavily influenced by the deep pockets of Big Pharma than anything else — and Big Pharma stands to lose tons of money through the successful implementation of routine stem cell therapies) must be stopped from their attempt to usurp our rights through their sneaky backroom subterfuge, because unchecked this will have a profound effect upon virtually all future autologous stem cell practices in this country. The consequences in terms of costs and lives are simply incalculable and unimaginable.

This battle must be fought and won. A physicians’ organization has been formed to oppose this “hostile
takeover” of our bodies and our rights – The American Stem Cell Therapy Association (ASCTA). You
can learn about them and their fight (OUR fight, too!) at http://www.stemcelldocs.org. There is a
corresponding patient and general public sister organization at http://www.safestemcells.org.

Together we must fight this battle for control of our own bodies, for our own treatment, for our own health and indeed for our own lives. We cannot entrust these precious jewels to the FDA, which has repeatedly
proven that it has been hijacked to serve those it was intended to regulate. It serves Big Pharma and big
business interests, not the American citizen. Take the time to visit these websites, learn the truth and
then make your voice heard, loud and strong. This may not directly affect you today or tomorrow. But I
doubt there are very many people in this country who don’t have an afflicted friend or relative who
might benefit from stem cell therapy sometime in the very near future. Will it be available for them?

We must stake our claim to that future. It’s ours by right. We can’t let those rights get brazenly grabbed
from us by big business interests and power-hungry bureaucrats. We want – and demand – to live our
lives to the fullest.

“We hold these truths to be self-evident, that all men are created equal, that they are endowed by their
Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of
Happiness.”

I can’t alter the path behind me. I demand a voice in the charting of my future course.

Written By:

Jim Anderson
June 17, 2009

* “End of life care in chronic obstructive pulmonary disease: in search of a good death”
Anna Spathis and Sara Booth
ABSTRACT: Chronic obstructive pulmonary disease (COPD) is an incurable, progressive illness that is
the fourth commonest cause of death worldwide. Death tends to occur after a prolonged functional
decline associated with uncontrolled symptoms, emotional distress and social isolation. There is
increasing evidence that the end of life needs of those with advanced COPD are not being met by
existing services. Many barriers hinder the provision of good end of life care in COPD, including the
inherent difficulties in determining prognosis. This review provides an evidence-based approach to
overcoming these barriers, summarising current evidence and highlighting areas for future research.
Topics include end of life needs, symptom control, advance care planning, and service development to
improve the quality of end of life care.

TAGS: FDA, COPD, COPD Disease, Disease Cures, healing diseases, Jim Anderson, diabetes II, Chronic Obstructive Pulminary Disease- COPD, Chronic Pulminary Diseases and Stem Cell Research, Stem Cells Classified as Drugs By FDA, Stem Cell research, Stem Cell Pioneers, StemCellPioneers.com, emphaysema, Pulmonologist, lung disease, death or cures.

To join the fight against the FDA who are now deciding to make your stem cells a drug, delaying research in stem cells and to get more information on how you can help visit: Stem Cell Pioneers

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12 thoughts on “COPD -The Cure is in Stem Cell Research”

  1. Germany is leading the way- COPD stemcell tratment for about 8500 euro. I agree with much of what you write

  2. Millions of people suffer the complications of COPD. Current treatments are limited to bronchodilators; cortisone inhalers and anti-inflammatories. For the past several years STEMCELLREGENMED has been involved in research development in this field. Treatments because of current laws have to be given outside of the U.S.A.
    Patients have shown clinical improvement in their respiratory function as shown by increased endurance to sports and walking; improved quality of life in their ability to function without oxygen inhalation; decreased need for using inhalers; able to sleep at night without any shortness of breath. The therapy includes the administration of pulmonary stem cells and trans-retinoic acid by intravenous and nebullizer inhalation; glutathione by inhalation; autologous stem cells from the peripheral blood or bone marrow. Burton Feinerman, M.D.

  3. My beloved 11-year old dog was diagnosed with COPD just over one month ago.
    In a little over three weeks, he was dead. In fact, he died in an oxygen cage.
    I had never heard of COPD. Of course, like others, had seen rampant TV ads extolling the virutes of inhalers, but didn’t really pay attention – thinking it was something for asthma or other diseases that didn’t affect my life. Little did I know…

    Like many humans, my dog was immediately put on high doses of steroids (Prednisone), oral and IV bronchodilators, Flovent and Albuterol inhalers, steamers, nebulizers, antibiotics, IV fluids and including Lasik, and oxygen via canulas on good days, a sutured nose-hose on bad days, and a large oxygen tank (he was a 75-pound boy) cage at the end.

    During his three-and-a-half week descent into the hell that is literally gasping for air to stay alive, I spent almost all available time researching COPD – for humans and canines – and was extremely disappointed at how little treatment exists, that there is no cure. Doctors kept insisting that my dog had ‘chronic’ COPD – defined as existing a minimum of two months. Yet, I spent every day and evening with my dog – we were almost never apart – and he never displayed a symptom – until about 1-2 weeks before his emergency room visit. The only symptoms during that brief time were a gagging action he would make at first only once a day – then twice a day – and then suddenly he coughed up some phlegm – and I took him to the emergency room. I had thought the once-a-day gagging – that lasted just seconds – was post-nasal drip – due to allergies – causing a little gagging as it ‘went down the wrong pipe’. It was incredulous to learn he had severe COPD – apparently evidenced by a bronchoscopy, many Xrays at various facilities, sonograms, and lung/throat cultures looking for other culprits such as bacterial or viral pneumonia, N1H1, fungus, kennel cough, worms, you name it – I ordered them to search for ANYTHING else that could be going on as it seemed incomprehensible that a normal, healthy, hungry, active dog could go from slight cough (what I thought was a gag) to severe and deadly COPD in essentially a two week period. And three weeks later….would be dead.

    I wish anyone with this disease the best. A lifelong friend called the other evening to tell me she is now on Albuterol with a diagnosis of COPD. This was not a surprise – she has smoked since about age 15, with a chronic cough for the past couple decades – she is now late 40′s. I feel for her. I know what is coming. Her problem I understand – at two packs a day it was obvious years ago where her pulmonary health was heading. I feel for her, I will be there for her, but it is no shock. My beloved canine companion’s death was a complete shock. I will never understand how he somehow managed to ‘skip’ mild, and then moderate COPD, instead progressing rapidly to ‘severe’. I know, I know….the doctors say dogs ‘compensate’, are stoic, hide their illnesses….I’ve heard all of this 1,000 times. He must have been a Houdini to hide it that well – to die of it so quickly after diagnosis and symptom onset. A terrible disease. Here’s to hoping it soon gets the attention and research funding it deserves.

  4. after being on oxygen for 7 years 24/7, I detest the tv commercials for copd inhalers. Spiriva, Advair,Symbicort all show people happy,smiling and coping with their problem. They all show people swimming, dancing,golfing and all sorts of activity. NONE of the commercials show ONE person wearing an oxygen hose and struggling to do even the most minor functions,like getting dressed or taking a shower. These ads are SO MISLEADING that they should be banned !!! I am or have used these inhalers and they barely keep me alive. BUT, the pharmacuetical companys are wallowing in their profits and could care less.

  5. It is amazing the benefit of adult stem cell research and the results are spectacularly positive. Unfortunately the FDA is stopping the clinical trials and putting up road blocks for the cure of diseases. The FDA has corporate drug company ties and we will never see a cure for COPD unless people demand it from the US government. The Senators and President Obama are still the slaves of drug company’s for their own political gains and campaign contributions. Ron Paul seemed to be the only politician and a medical doctor that was not advocating for drug company’s – he actually want people to be healthy. The FDA must be overhauled immediately before this fake swine flu bug takes over the sensibility of government agencies -but alas …it has already taken place.

  6. Someone I knew had COPD. He went for stem cell injections almost 2 years ago. He was in real bad shape. It is amazing how well he is doing now. His story is in the local paper Wenatchee World. Just google wenatchee world and copd stem cell.

  7. We totally agree in fact stem cell research is also being stiffled and dragged through the mill to delay research that will cure: Parkinson, Alzheimers, COPD, MS and many more diseases. If NBC wanted to do a more accurate story on dog cancer -they would interview a company called Vet Stem. Vet Stem is doing amazingly well in treatments that work for dog arthritis and bone diseases. They are now expanding at a greater rate to treat dogs with auto-immune illnesses and much more. It is curious as to why NBC does not do stories on treatments that work but instead support “dog cancer drugs” that are not proven but are endorsed by the network. See: http://Doghealth1.com for more information on : stem cells for dogs. You will find accurate updated information on stem cell research that your dog can get -but you cannot because the FDA is dragging its feet on human trials. People with COPD especially are being shoved to the back of the line when it comes to the FDA and we all know the reason – drug company profits. Again the FDA has become the laughing stock of medicinal safety and research and remains in the pocket of the wealthy drug corporations. It is a tragic world where the truth is suppressed and people are made to suffer for the CEO’s of big pharma similarly they act like the bankers of Wall Street and are allowed to do so by this Obama administration. That is not the change people voted for and change must happen now.

    Thank you for your valued comments- we can only continue to bring the truth to light instead of putting up with network media false information.

    Politicol News Staff

  8. For those who don’t recognize the term “Alpha 1″ used by Nancy, that refers to alpha-1 antitrypsin deficiency, which is hereditary. The results can be the same emphysema or COPD that afflict others, just the cause is different from most of us. Please correct me if I got anything wrong there, Nancy.

    I really don’t feel comfortable discussing the details of my treatment in this forum. However, if you’d like to look me up on http://www.stemcellpioneers.com, you can shoot me a private message if you’d like (my username is Jim). If you take the time to explore the website, you’ll find lots of good information on the various treatments that are available. I hope you’ll join us! (There’s a sister website for COPD you might find interesting too … http://www.copdliving.com.)

    All my best,

    – Jim

  9. An excellent description of the plight of those of us with COPD. The FDA should wake up and allow stem cell treatment immediately.

  10. I share your thoughts and views. Though I am an Alpha 1, the end result is the same. It’s time for doctors and insurance companies to change. Where are you getting the stem cell injections from?

    Hope it all works out for you.

  11. Thank you for so eloquently stating exactly how patients feel. My doctors always say EXACTLY the same thing. Do they even see us as people or just a disease occupying a chair in their office? Our only hope is in being able to use our own stem cells now. End stage disease means just exactly that – we are at the end of our lives. Who is the FDA protecting? It is certainly not me. I should have the right to choose my treatment without going out of the country. I recently read an article in a major medical publication that stated that pulmonary medicine treatment has basically not changed in the last 25 years. How many patients have to die? Does anyone care? Every Christmas I feel like I made it another year. I look at my family and wonder if I have one more left in me or is this the last one? Another Stem Cell Pioneer.

  12. Thank you for your comment Kaye, we agree totally that medicine fails to recognize that people should be the focus -not drugs. This is just one of thousands of people who are suffering due to the lack of funding for stem cell research that works. We promise to bring you more information on the pioneers who are doing valuable research which will put an end to the suffering and keep telling these actual accounts until someone listens. The FDA needs to re-focus on the priorities of keeping people healthy, developing cures and relieving the suffering-instead of prolonging diseases. Thanks for dropping in to voice your thoughts and we hope for a cure for all diseases and further stem cell research.

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