Lung Institute upcoming webinars

[gerald]

These are probably worth some online time to review what they are offering in Stem Cell treatment. 
 It should provide clearer information than many of the technical papers we usually end up with!

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Lung Institute upcoming webinars

Watch the Seminar Online via Webinar & Ask Questions or Attend in Person

The aim of our seminars is education on the process of using autologous stem cells derived from the patient’s body to ease lung disease symptoms and address disease progression as part of a minimally-invasive procedure with demonstrated effectiveness. We discuss treatment options to enable informed decisions on how to proceed.
Each of our seminars consists of an informative, interactive presentation including:

An overview of the Lung Institute, our clinical team and locations
Facts about lung diseases
An overview of our minimally-invasive treatment options
Treatment candidacy

Please review the following items prior to seminar attendance to receive the greatest benefit:

A patient coordinator will be available at each seminar to answer questions, explain our patient intake process and discuss what to expect during your care at the Lung Institute.
If you choose to attend a seminar in person at one of our clinics, you will have an opportunity to tour the facility. Everyone, whether on location or attending online, will receive answers to questions about their condition and treatment options.

If you or a loved one suffer from a chronic pulmonary condition, we encourage you to attend one of our seminars. Take a positive step now by getting the information you need to proceed with treatment.



Thursday, September 8 | 2PM EDT
Presented by Dezi Zevin PA-C in Tampa, FL

Sign up here:



September 22 | 2PM CDT
Presented by Sreedevi Marakatham, MD and Melissa Rubio, PhD, APRN in Dallas, TX

Sign up here:

[gerald]

I registered for the one Webinar. They called up to "Qualify" me for the webinar.
My gut instinct tells me much of their qualifying was whether I was shocked by the price tag.

The conversation was a bit too salesy.

[ozboy]

Won't have anything to do with the Lung Institute......want evidence about them i can provide it....

[jarca]

I'm afraid I agree with Ozboy, Lung institute stem cell therapy is a scam.
I looked into this treatment a few years ago for joint pain. It sounded wonderful & I was so desperate I almost did it; However, I came to my senses when I researched results more and luckily saved myself a lot of money and disappointment. 
The webinar may be fun to watch; but if I watch it I will do it with extreme skepticism.

[ozboy]

The Lung Institute does a good job in trying to mimic the ''Real'' World Wide Authority which is The Lung Foundation......They are basically a Stem Cell Group of Clinics mainly in Florida and California, that offer this treatment with No Trial Evidence or Credible documentation, relying purely on Statements by people as proof...This treatment is NOT recommended by The Lung Foundation or any other Credible Source..and comes at a huge cost of around $7,000 up.....with no chance of ever getting compensation when things go bad......Do your research.....

Stem Cells are possibly a Future Cure but not in the near future, Real trials have only just started so there is no proof it works like these ''pioneers'' claim....




stemcellpioneers.com/showthread.php?9583-Copd&highlight=copd

stemcellpioneers.com/showthread.php?10923-StemCells-Inc-going-belly-up

[jarca]

the COPD foundation has some good info also;
www.copdfoundation.org/COPD360social/Community/Questions-and-Answers/Are-you-considering-a-Stem-Cell-Therapy-Clinic-for-treatment-of-your-COPD.aspx

ps. was the link for the seminar removed or am I just not seeing it?

[gerald]

The link has disappeared, no idea what happened to it.

[David]

I had a friend in this forum who lives down in South Florida where the Lung Institute is..

He told me he had looked into it and from what he knows it cost about $14,000 to have a treatment done. Problem is they can't stop the progression of the disease so the cells will die and you have to keep doing again and again. At $14,000.

I take it that it is for rich people. Like people who won the lottery or something.

I asked my Pulmonary doctor about it and he says the FDA does not approve of it so he will have nothing to do with it.

[lavishgail]

I sure ain't rich, so I'll stick home with my 02, and go out when I have too. I'm ok with that.

[lavishgail]

Oh David, one time I was so bad I had to sit down in walmart,* don't like the place anyway* rarely go their. To much walking. Anyway, I was so bad my face BEAT RED and NOT one person asked me if I needed help * water* nothing. People up North are mean. If I dropped dead they probably would have just pushed me to the side. . So at least everyone is so nice where you're from. But I do get it. To much is to much. I hate how people stare at me, like I'm from outer space!

[gerald]

I think this is a technology that we need to keep an eye on. I think that it is far too early to expect great success stories. My plumonary Specialist said they were raising more questions than solutions. But there is progress being made, and they understand much more than they did 5 years ago. For right now, I think the costs are too high and the chances of successful results are too slim.

However, some clinic is going to the first to develop a successful tradck record, and it will be of value to spot it and monitor how they work etc.

As for the Lung Institute, in the phone conversation about the webinar was Interesting. Last time I had a sell like that I was talking to a Salesperson FOR Timeshares !

[David]

Researchers are definitely looking for a cure. However, in order to find a cure, they must first find the root cause. Once the root cause is discovered, then efforts can be made towards finding a medicine to block its effects. COPD researchers in the field of genetics are working overtime to find this root cause. They have so far identified only one for sure COPD gene, and this is the one that causes a rare form of emphysema called alpha-1 antitrypsin deficiency. This gene becomes active even if you never smoked.

Researchers believe there are many other COPD genes, and they believe these become active only when exposed to some form of environmental factor.

copd.net/answers/expert-answers-finding-cure/

[gerald]

Nothing earth shattering in the Webinar.
They are not promising a cure or anything close.
Their claim is that their procedure reduces inflamation and supresses it for 3-6 months and gives the lungs time to heal themselves.
They claim their procedures show benefits on a curve with the maximum affect being in 3 months and then trending downwards toward 6 months.
They track their success rate at an 82% response rate.

Costs for the procedures range from $7500 to $14000 for the three days, depending on what you decide. You can also get followup 1, 2, or 3 day procedures after 6 - 12 months.

What they did not cover was any downside. Can they make your condition worse?
It was worth the hour for the webinar beyond that.......

[jarca]

Thank you Gerald for the information about the webinar! At least they aren't making false promises of a cure any more.
If reducing inflammation for a few months would allow are lungs to "heal themselves" then I would think those who have been on extended steroid use would have shown some healing tendencies (my opinion only).

In the link I put from the COPD foundation there were several other links about how they could be potenially harmful.
there is a lot of reading so you'll need to click on all the links to read about possible harms.
I clicked on one of the links = www.closerlookatstemcells.org/stem-cells-and-medicine/nine-things-to-know-about-stem-cell-treatments
and it has a few potential harms, including, but not limited to;

"Here are just a few known risks of autologous stem cell treatments:

Any time cells are removed from your body, there is a risk they may be contaminated with viruses, bacteria or other pathogens that could cause disease when reintroduced

Manipulation of cells by a clinic may interfere with their normal function, including those that control cell growth

How and where the cells are put back into your body matters, and some clinics inject cells into places where they are not normally present and do not belong"
and
"Unproven treatments present serious health, personal and financial considerations. Consider what might be lost and discuss these risks with your family and healthcare providers."

As I said, I looked into it years ago for my joint pain, but the more I researched the more skeptical I became....follow some of the links on that COPD foundation site I put; they have reports from the Lung association & many reputable institutes that explain more on how it may harm you. 

[gerald]

It is getting difficult to sort out the truth between the pro and anti Stem cell lobbies!! There are strong voices on both sides.

The potential damage that can be done is one of the major issues. And the fact that Lung Institiute did not adress those or even mention them is a concern. It is one thing to pay the money for a potential benefit, if the only down side is that nothing gets better that is one thing. however, If you wind up much worse than you started out that is a completely different issue!!

[ozboy]

I've heard from many patients who say that the treatment has helped them. This case should boil down to Informed Consent that the Lung Institute most likely had her sign and whether or not she has any actual written proof of what she claims she was told. Again, patients need to be realistic about what treatment can do for them. Stem cell therapies available in the U.S. today are not a cure, may or may not improve lung function, may or may not allow one to quit using supplemental oxygen and may or may not have lasting effects. Many patients do not listen however and decide that somehow stem cell therapy will let them resume a normal life like they had before they became ill. They often continue bad habits and don't do the follow up recommended. They believe stem cells are a magic bullet. They aren't. Ben Vinson shouldn't be speaking for everyone because he's wrong. Stem cell treatment has helped many patients. Of course, he's going after a juicy settlement, so his statement should come as no surprise.




Instead, according to the suit, she got worse. Now Rivero, 58, is the first of what her attorney says are dozens of former patients seeking class-action status in a legal action against the institute.

Tampa Bay Times
Tony Marrero, Times Staff Writer
August 25, 2016

TAMPA — Diagnosed with lung disease and determined to shed her oxygen tank, Tammy Rivero resorted to an unorthodox treatment.

In 2014, Rivero took out a home equity loan to pay $7,500 and traveled from her western North Carolina home to Florida to undergo stem-cell therapy at the Lung Institute in Tampa. The institute claimed she would see results in a matter of weeks, according to a lawsuit Rivero filed last week.

Instead, according to the suit, she got worse. Now Rivero, 58, is the first of what her attorney says are dozens of former patients seeking class-action status in a legal action against the institute.

Rivero's suit says the Lung Institute violated Florida's Deceptive and Unfair Trade Practices Act by duping clients into believing stem-cell therapy worked despite the absence of credible medical evidence.

"It's one thing for folks that have an incurable disease to try experimental treatments," said Rivero's attorney, Ben Vinson Jr. of Tampa. "But it's another when the person offering the treatment knows it doesn't work."

Speaking for the institute, Lynne Flaherty Margnelli, executive vice president of Regenerative Medicine Solutions, said in a statement to the Tampa Bay Times: "Lung Institute prides itself on putting patient care first and always operates with the patients' best interests in mind. We do not believe the case has any merit and we look forward to resolving this matter."

A 2015 Times story said there is little evidence that the institute's treatment works for patients with incurable lung conditions such as chronic obstructive pulmonary disease, or COPD.

Dr. Burton Feinerman, who was medical director at the Lung Institute when the Times story ran, said then that the American medical establishment is too slow to embrace developments.

"The U.S. is so far behind the rest of the world, it's pathetic," said Feinerman, who has since retired. "Doctors are not scientists. They know how to read a cookbook, but God forbid if you want to add a new recipe."

Stem cells can reproduce themselves to repair tissues and mature into cells that perform a specific function, such as in the skin, muscle or blood. As part of the institute's treatment, adult stem cells are harvested from individual patients and later reintroduced into the body with the promise to restore deteriorating tissue, such as lung tissue scarred by COPD.

According to the suit, the cost of the procedures ranged from $5,000 to $12,000. The suit claims the institute, which occupies a fourth floor of a downtown Tampa office building, brings in at least $2 million a month.

Each patient is responsible for paying the full cost of the procedure because the institute does not accept health insurance, Medicare or Medicaid. The suit claims the institute urged prospective patients who could not afford the cost of the procedure to raise the funds through bake sales and Kickstarter campaigns.

Vinson said Rivero was not told that she would have to pay for followup treatments, which she could not afford.

[Ellie]

I had the treatment in Dallas March 2016 I watched many webinars and read different testimonials and my family ,while not asking me to try, did encourage me to think about it Often!!! While the webinars seemed less than a professional production, I liked that they seemed to care more about getting their message to patients than how the backdrop looked There were obvious red flags that I shoud have noticed, such as there apparently was a small group of potential patients in the room as the Doctor spoke, you never heard the questions or see the guests asking those questions. Maybe it was a matter of privacy as far as showing faces but you never could hear the voice and know what the question was.

The actual procedure was disappointing as it was just a IV blood draw, taken from the room and in 15-20 minutes brought back with appearance of glucose or a light pink. When I asked about the color, I was told only the blood platelets were used and when reintroduced into my body the natural flow of your blood system would take the now clumped cells to the lungs and to the place needed to slow the COPD progression. At no time did they claim cure and I understood that. Since I have severe SOB, I did ask if there would be a noticeable change for the better. They could not guarantee that but said that some patients had reported that the SOB was not as severe after the treatment.

I paid 7500.00 and was told it was advisable for me to have a follow up treatment in a few weeks. I was given a list of a couple of things to order and to mix and use via the nebulizer. I did for a couple of weeks and realized I was the very same as I was prior to the treatment. They called one time to see how I was doing and if I would be interested in another treatment. I just told them no and I have not had another call. To be fair in case thee are others that may seem to be helped and would not appreciate my calling it a scam, I will just say that I was just not the patient that derived any improvement. I have always believed and still do that stem cells that can target certain areas of the lungs to start a healing process is in the future and there are lots of future patients that this could be a lifesaving process.

[ozboy]

Well i think he reason so many initially feel that it worked is because of the diet and exercise program that goes hand in hand with this procedure.....what the majority of people feel are the benefits of the latter......Never met or read of anyone that has continued benefit from this stem cell racket...nor anyone that writes glowing reports willing to produce their before and after PFT results.....Would you not think that you would want to share it with anyone interested??? Guess not...

and the cost....not sure how many could even afford to continue treatment even if it did work.....just my opinion..

Yes there are some genuine research into stem cells going on but any real break thru for regrowing Aveoli in the lungs is many years away......The Lung Institute is making as much money as it can by opening these clinics, which have been banned in most countries around the world...

[gerald]

There are people around the Stem Cell Pioneers group that have had stem cell treatments
and have gotten benefits from them. Although I believe they used a different clinic.  I believe
in many of the cases some fo the benefits tapers off over time.

Last year some research found 12 different stem cells in the lungs.  So just providing stem
cells without providing specific kinds is a shotgun approach and a success would be by
chance only.

The price seems enormous. However, if I believe it was a cure I would find a way to pay for it.

I believe Stem Cell Research has potential and research is ongoing. However, I do not think
they know enough yet to provide a consistent predictable response.  From what we know
now I suspect it may become a valid treatment, but not a cure.  And while the treatment
is expensive its prices will come down once it is proven. And given what we are paying
for prescriptions and everything else it may not be that much of a reach.

With the speed that things are moving I would expect we are 5-10 years from seeing
something we would be comfortable with.

[ozboy]

Thanks..Any Links to support this evidence?

QUOTE: There are people around the Stem Cell Pioneers group that have had stem cell treatments
and have gotten benefits from them. Although I believe they used a different clinic.

I have been in contact closely following a lady named ''Barbara'' who is behind pushing this treatment and also people who did go thru the procedure....Just curious


Current Stem Cell Trials in Australia
www.stemcellsaustralia.edu.au/About-Stem-Cells/trials-in-australia.aspx

Warnings.
www.smh.com.au/national/stem-cell-treatment-warnings-after-australian-woman-dies-in-russia-20140728-zxrzt.html

Australia has its share of private clinics offering unproven stem cell therapies, thanks to what the consortium of Australia’s leading researchers in the field, Stem Cells Australia, describes as “a controversial loophole” in our regulations.

“[The loophole] means that unproven stem cell treatment is excluded from the regulatory framework provided the treatment is being offered by a registered Australian doctor, is using the patient’s own cells and is a one-patient treatment”, the consortium’s Australian Stem Cell Handbook (2013) says.

“It is not a requirement that such treatments have to be first proven safe and effective in clinical trials.”

Late last year the NHMRC also warned of the risks associated with unproven treatments on offer in Australia for conditions including multiple sclerosis, spinal cord injury, arthritis, heart disease, autoimmune diseases, cerebral palsy and autism.

Although stem cell therapy offers promise in a number of conditions, the only application that has so far proved to be safe and effective is the long established practice of using bone marrow transplants in disorders such as leukaemia, the NHMRC said in its accompanying guide for medical practitioners.

But we shouldn’t let a little thing like evidence get in the way when we’re talking about cures for sick children.

Italian researchers Elena Cattaneo and Gilberto Corbellini found out just how nasty things can get when you take up arms against purveyors of unproven therapies — in their case the Stamina Foundation, a private organisation claiming stem cell treatments offer benefit in conditions as varied as Alzheimer’s disease, diabetes, heart disease and Tourette’s syndrome.

Despite the lack of evidence supporting its claims, Stamina won a number of court battles and even accessed public funding for some of its treatments.

Writing in Nature last week, Drs Cattaneo and Corbellini describe their ongoing battle to rid Italy of such unproven treatments and the vilification they received in some quarters for “keeping children from life-saving treatments”.

An article in the same issue of Nature argues stem cells are being used as “a wedge” in a broader international push to allow marketing of unproven medical interventions and reduce the power of regulators.

Right-wing American think tanks like the Heartland Institute and the Goldwater Institute have mounted emotive campaigns to such ends.

Heart-rending patient stories, articles about regulatory obstacles preventing access to those life-saving treatments … you can probably imagine the kind of stuff.

Who do such campaigns really serve? They may claim to be motivated by the needs of desperate patients, but their real constituency is probably commercial organisations that find the regulators’ insistence on evidence, well, a little annoying.

It’s no accident that the claims made for stem cell therapies tend to cluster around conditions for which mainstream medicine doesn’t have a solution.

So what are doctors to do when a patient tells them about a wonderful new treatment they have discovered online?

The NHMRC guide for medical practitioners has a list of tips. My favourite is: “Encourage your patients to think twice about statements describing the therapy as a ‘quick fix’, ‘scientific breakthrough’, ‘miracle cure’, or similar. It may help to suggest to patients that if it sounds too good to be true — such as a claims that a therapy can cure a disease or treat a variety of conditions — it usually is.”


Jane McCredie is a Sydney-based science and medicine writer.

[ozboy]

And the latest from their site....which gives you more of an update:

www.stemcellpioneers.com/showthread.php?11430-Installment-88-Ask-the-Doctor-with-Dr-Sreedevi-Marakatham-Lung-Institute

Questions & Answers

Q: Why do you offer two kinds of stem cell treatments for lung disease? What determines which treatment is best for an individual? And how do you determine if a patient is a good candidate?
The Lung institute offers two different stem cell treatment procedures, venous and bone marrow. In the venous procedure, stem cells are harvested from peripheral blood and in the bone marrow procedure, stem cells are harvested from the bone marrow. We review the patient’s medical history and records to determine which procedure is best for the patient. For example, for a patient on blood thinners, bone marrow procedure may not be a good option. Our patient coordinators can guide the patient in the initial screening process and our physicians can help the patient to select their best option.

Q: Is your venous treatment basically the same as a PRP treatment?
PRP stands for “platelet rich plasma” and our venous treatment is a combination of stem cells from the peripheral blood and PRP which contains anti-inflammatory factors as well as various growth factors.

Q: If a patient has prostate cancer that is not at the stage where treatment is imperative would stem cell treatments be advisable or not? What about patients with other cancers that might be in remission? No chemo or radiation is taking place if that is important.
We review each patient’s medical history and records carefully before proceeding with the stem cell treatment. In general, we recommend five-year cancer free period for most cancers except certain skin cancers, before proceeding with stem cell treatment. But because of their tendency to spread to bone, any patient with history of prostate cancer or breast cancer, we exclude them from getting bone marrow procedure, but the patient can do venous treatment if he or she has been in remission for the past 5 years at least.

Q:Are the treatments for IPF and COPD the same?
The stem cell treatment we offer is the same for IPF and COPD – both are aimed at calming chronic inflammation and slowing the progression of the lung disease.

Q: The first time I got treatment, several supplements were recommended to me. The second time, I was told only to nebulize glutathione every other day. I felt the supplements were giving me more energy and stamina so I am continuing them. Is there any reason not to? Also, is there a reason not to nebulize the glutathione daily? I find it helps my breathing.
There is no reason not to continue using the supplements if they help you. We have stopped recommending the supplements as part of our overall protocol because it is ultimately up to the patient as to whether they would like to utilize them and how much benefit they may gain from the supplement usage. Regarding glutathione, daily use may lead to some irritation of the airways so we typically recommend use every other day to prevent any negative side effects.

Q: Can you explain what l-glutathione plus is and why you recommend it.
Glutathione (reduced glutathione, y-glutamylcysteinylglycine, GSH) as part of the protocols is utilized for its antioxidant and mucolytic properties. It is a primary factor in the body’s ability to deal with oxidative stress. Oxidative stress has been shown to play a major role in the pathogenesis of COPD.
As a potent antioxidant it helps improve host defenses and oxygenation. Typically the mucus produced in the airway is cleared by ciliary transport and cough but this is not the case in chronic lung disease. Excess mucus in the airway lumen can result in measurable mechanical obstruction of the small airways and can impact disease pathogenesis and prognosis of airway disease, especially in COPD and can be associated with chronic expectoration, increased hospitalizations and respiratory infection related mortality.
Many of our patients noted the day after their first treatment with glutathione their breathing felt easier and oxygen levels as measured by finger pulse oximeter were elevated.
​Bronchospasm has been noted in some asthmatic patients and it is felt that these patients may be sensitive to sulfites. We do not use glutathione in patients with an asthma diagnosis.

Q: You changed from adipose to bone marrow. Was it because of FDA restrictions or is bone marrow more effective or easier to extract? Do you use a local anesthetic or is a patient actually put under?
The primary reason for the change from adipose to bone marrow was because the research shows and we have found that bone marrow offers the most complete mixture of regenerative components to promote healing of the lungs. This includes the two main types of stem cells, hematopoietic and mesenchymal, and some signaling factors found in platelet rich plasma. Our procedures are all done on an outpatient basis with local anesthetic only. Using certain techniques, our providers are able to minimize discomfort resulting in patients reporting very little pain during or after the bone marrow harvest procedure.

Q: To what do you attribute some patients doing so well when they get treatment and others seeming not to get much benefit at all?
We are not exactly sure why some patients are doing so well and some not getting much benefit after the stem cell treatment. From our observation, we see that most patients who do not seem to respond well with stem cell treatment are in the advanced stages of lung disease.

Q: If a person has had stents implanted, is it still okay to get stem cell treatment?
Coronary stents are not a contraindication for stem cell treatment. We have had many patients with stents who had stem cell treatment without any complication.

Q: Do you see the cost of treatments going down in the future? Do you think insurance will eventually cover treatments? Any thoughts on the FDA's proposed regulations on adult stem cell therapies?
The cost of current treatment protocols may go down in the future because the field is ever progressing so newer technologies will likely be available as time goes on. I do not believe insurance will cover treatments in the immediate future because we still have a long way to go before they see the long term studies demonstrating the cost benefit to them for covering these treatments. I believe a person’s own stem cells should not be regulated like a drug, however I do believe that there should be more quality oversight of stem cell clinics to ensure patient safety and efficacy of treatments are being monitored effectively. It is imperative that stem cell clinics and regulation agencies work together to provide access to care for those suffering now, while providing a path to continually improve efficacy and develop efficient and safe technologies.

[gerald]

I do not have any links documenting the successes at the moment.  

I have monitored Barbara's writings for quite some time.  There were also a couple of the other founders there that has the procedure.  None of the effects appeared to last over the long term.

Also it will be impossible to separate the placebo effect from a real effect without a much larger population base.

However, if we look at the treatment for Leukemia and the bone marrow transplants. It has essentially be identified as basically stem cell treatment.  And even in that, over a 30 years(?) experience of  treatments it has been somewhat hit and miss.  And the disease can re-occur.