Author Archives: patients

A Message of Hope

Happy New Year! Our first post of 2018. Patients for Stem Cells was asked to participate in a docu series on adult stem cells. Follow the link below to view the series. The series was due to release in October. When the producer found out about the passage of the historical medical liberty legislation “Charlie’s Law” in Texas we were contacted and asked to participate. They were gracious enough to delay the release date so we could tell the story of our Texas victory. It was a great honor and we are very grateful to have been given an opportunity to share our personal stories and how Texas led the nation in passing legislation allowing chronic patients to receive adult stem cell therapy in Texas.

There is already a misinformation campaign underway to discredit the series. We stand by the fact that the overall message is a message of HOPE. Countless patients with an array of afflictions have reaped the benefits of adult stem cell therapy. There will always be debate over running it through clinical trials even though we have numerous patients who have received elevation in quality of health. There never seems to be a place at the table for those patients. We at PFSC do not believe our cells are a drug. Therefore, the ongoing debate over running it through clinical trials are irrelevant. We believe this is a decision that should be made between a doctor and a patient and falls solely under the practice of medicine.

It can be exhausting to just make it through the day when you battle a chronic disease. Add to that the need to constantly defend your choice as a patient to seek a non FDA approved effective safe treatment and it can be completely overwhelming. We see this happening within our own families. Some well intended family members express grave concerns because they hear all the rhetoric about adult stem cell therapy and how it is not a proven therapy. We are here to dispel that. The voices of the countless patients who have been successfully treated are strong! We may not be scientist, but we are experts in our health and managing life with a chronic disease. It’s fair to say we all have our PHD’s in what’s good for our own chronic condition! So what is ourPFSC’s job? It’s simple, we are a safe zone. The voice of reason. We understand without judgment. We are here in the trenches living this chronic life with you. We are proud of the project and hope it touches the lives of those who are struggling or simply lost hope. Patients For Stem Cells is a patient based group and we stand united with a clear message of HOPE and HEALING.

Here is a 3 min clip of the upcoming docu series on adult stem cell therapy. The series can be viewed at thehealingmiracle.com. The full release will be January 16th. Please forward and share. It’s important that we get the word out.

View the video at thehealingmiracle.com

Texas Stem Cell Legislation 2017 – Action Alert

TXCap UPDATE June 2017 THANK YOU to everyone who wrote and called the Texas Legislature! HB810 Charlie’s Law was signed by Gov. Greg Abbott. The Texas Board of Health will define rules starting in Oct. 2017. Here is a news report as of Sept. 25, 2017 The future of stem cell therapy in Texas
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May 13th, 2017 – There are currently bills before the Texas Legislature that would allow access to adult stem cell therapy in the State of Texas, rather than by travelling outside of the U.S.

This week advocacy members of Patients For Stem Cells testified before the Texas House of Representatives in support of these bills, and we are happy to report House Bill 810 by Rep. Tan Parker, passed the Texas House with 150 yes votes and zero no votes.

An emotional speech by Rep. Drew Springer, R-Muenster, about his wife’s need for a medical cure from stem-cell research, brought together this unanimous, bi-partisan vote.

Now the Texas Senate needs to hear from their Texas constituents! The next step is the Senate vote, and we have advocates at the Capitol who will deliver your testimony.

If you live in Texas, please send the following information:

1. Your full name, city, state & zip code

2. Why you think adult stem cell therapy should be allowed in Texas. Maybe you or a loved one has a terminal or chronic condition that could be treated by stem cells. Or you just want to support medical freedom.

Send your email to: PatientsForStemCells@gmail.com

Deadline before Senate vote: Tues, May 16th, 2017

Please click here to find your Senator and also call to express your support for the HB 810 stem cell bill.

For everyone who doesn’t live in Texas, rest assured that this legislation may well start a trend for other States to follow. We will keep you informed as this movement expands, and look forward to your participation!

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♦ FDA wants to Stop Stem Cell Therapy AND Breast Reconstruction -Make Comments by Sept. 27th 2016

fdahearingUPDATE: Congratulations everyone! We submitted 6,952 comments! Click HERE to read the comments.

Sept. 24th, 2016 – Cellular therapy is a disruptive medical innovation which is revealing a surprising truth: our own bodies are the best source of medicine ever discovered. This is challenging many of the conventional therapies, such as drugs and surgery. The FDA’s regulatory approach starting in 1993 has been inhibitory to the wider adoption of this therapy. The current proposals, which seek to classify certain stem cell procedures as a prescription drug, which will only insure that more patients are forced to pursue medical tourism.

If you you think you or a loved one might ever need to use their own stem cells, for example to avoid a knee replacement, then please take a few moments to make comments to the FDA by Sept. 27th. Instructions provided below.

The FDA has presented 4 draft guidances, with the goal of shutting down stem cell clinics in the U.S. Readers of the PFSC blog helped start the citizen feedback process earlier this year when over 600 registrations for the FDA Part 15 hearing overwhelmed the agency. The hearing had to be postponed until Sept 12-13th 2016 and expanded to 2 days, which only allowed 5 minutes each for the 100 people who registered to speak. These presentations from scientists, cellular therapy providers and patients were mostly in opposition to the guidances. The legal and scientific details are available below in links to the testimony and articles.

FDA PROPOSED BAN ON BREAST RECONSTRUCTION TECHNIQUE
The FDA was roundly criticized for proposing that not only your stem cells, but also your fat, should be classified as a drug, requiring a decade of trials. Rick Jaffe, a lawyer with 3 decades of healthcare legal experience, raises the alarm in this passionate piece.

THE SCARIEST ATTACK ON PERSONAL FREEDOM YOU’VE NEVER HEARD OF/ THE BIG TAKEWAY: If the FDA gets its way, the most popular post mastectomy breast reconstruction procedure will become illegal, and so will many other life enhancing procedures – Richard Jaffe, Esq. The huffington Post, 09/18/2016

HOW TO MAKE COMMENTS TO THE FDA BY SEPTEMBER 27, 2016

Click HERE to submit your comments o FDA.

Tell your own story if you have had stem cell therapy, or think you want it in the future.
In your own words (or FDA will reject it) make the following points, if you support continued access to your cells:

1. Withdraw the four HCT/P guidance documents, and work with the experts on solutions
2. Stop trying to regulate a person’s use of their own body parts
3. Continue access to responsible stem cell therapy that uses the patients’ own tissue

A great deal of media attention has arisen, so you may want to save your comment, and also post it as a comment on the articles we’ve included below.

Click HERE to read comments submitted by others.

UPDATE: An amazing 6,952 comments were submitted by the deadline of Sept. 27th. FDA has never received more than 20 comments on previous guidances.

Click HERE to review the speaker agenda for the two day hearing.
Click HERE to view Day 1 of the hearing.

1:48:00 Mary Ann Chirba (Boston College)
1:53:00 and 2:58:40 Arnold Caplan (Case Western Reserve)
1:59:10 and 2:53:00 Keith March (Indiana University)

These three presenters are leaders in the field. Caplan was the first to discover the healing abilities of adult stem cells. In FDA Draft Stem Cell Guidance Documents Exposed as Improper Rulemaking, Bad Science and Heartless Public Policy Richard Jaffe comments “…these presenters and especially March and Caplan showed that the FDA’s view was biologically unsound.”

Alexey Bersenev (Yale University) posted an objective scientific review of the hearing, also noting the import of March and Caplan’s input,
Historic FDA public hearing on regulation of cell therapy in US

Click HERE to view Day 2 of the hearing.
Click HERE for a patient presentation provided by SammyJo Wilkinson.

In the last presentation at the hearing, SammyJo explains how her own stem cells put long-term multiple sclerosis into remission and recovery since 2014. She also echoed the proposals for solutions presented, such as the conditional approval plan and patient registry proposed by Arnold Caplan, Janet Marchbroda (BPC) Day 1 4:16:00, and Leslie Miller (AACT) Day 1 3:23:58.

Editorial – Improving the regulatory framework for cell therapy does not equate to deregulation
Caplan A. I., Ricordi C., CellR4 2016; 4 (4): e2109

Many moving presentations were made by patients on Day 2, about lives restored by cellular therapy from illnesses that had no effective treatment options. In our next post we will explore how the media has covered the FDA regulatory story, and how the patient experience is finally being included.

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