Monthly Archives: July 2013

Stem Cell Independence: Free The Sick and Disabled

Destiny Marquez

Destiny Marquez

Today we celebrate our Nation’s Independence Day. July 4th, 1776 we declared the following: “ 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.”

We are still fighting to ensure these unalienable rights are available for our citizens whether they are a minority, woman, gay, or underprivileged person, there seems to be great momentum addressing the needs of these groups to attain these rights.

However, there is a group of people that is in desperate need of a Freedom Train. Their plight is not so different from any group that has been enslaved by another. You may think how is this possible in the United States of America, land of the free? Who is this group? These people are condemned to a life of suffering leading to a terrible death. These people have no good options and cannot escape the fate life has dealt them. Their suffering creates wealth for the privileged and is the cornerstone of one our largest national industries. They are enslaved by our economy and therefore doomed, at least for the next 10 years.

You are probably thinking, this is over the top, how can you say this, why haven’t I heard of this group? You have. You may already be in it, or have a loved one or friend who is a part of this group, it is just that we have been educated to accept the fate of these people as just part of the natural process until something better comes along. We turn a blind eye to their suffering, excusing ourselves by thinking it is some professional’s responsibility to help them, not ours. We live our lives freely and pursue our happiness day to day, year after year until it becomes our turn to either die quickly or join this group at the end of our lives.

So who could this group be? I speak of any person who is suffering with a chronic health condition or disease that is curable or manageable by expanded autologous stem cells. We have the power to heal these people right now. We can end their suffering right now. They could live freely in their pursuit of happiness right now.

So why are we not doing this right now? We have the technological ability to safely treat these people, but our entire medical industrial train is running in the opposite direction. This massive industry needs these people to stay sick so they can continue to treat them with these archaic, intrusive and dangerous therapies that keep them down, suffering, needing all of the services our country has established to care for this chronically ill and aging group of people. If we freed these people with autologous stem cell therapy what would happen to all of the specialists, research facilities, hospitals, therapies providers, nursing facilities and pharmaceutical companies that are currently profiting from this fast growing population group?

How can we make this change and save these people from this life of imprisonment and living a less than human existence? We must declare our Independence and fight to free these people while helping our nation find a way to transition this healthcare economy to truly heal the sick instead of profiting from the sick. Our economy can once again be a shining light for the rest of the world where our sick become healthy contributors again.

You may wonder why I am writing this. This year will be my 10th anniversary of caring for my dad, Bentley Lyon, who lives with left side paralysis and Parkinson’s disease. Today he could potentially be freed from his Parkinson’s symptoms and have a better chance of healing his paralysis if he could have affordable access to expanded autologous stem cells. He could care for himself and become a productive part of society. He could go back to writing mystery suspense novels again. Imagine the tales he could tell. He could speak out in five different languages for human rights with great humor. We are living the best life possible given his incredible fight for life, but imagine what our lives could be like if he could be free to pursue life, liberty and happiness.

Today we must declare our Independence for ourselves and our loved ones. We must make a vow to fight for affordable access to our own stem cells for all humanity. We must work hard to find the fastest route because 10 more years of millions of peoples’ needless suffering is unacceptable. We need to free our own stem cells, in order for all of us to truly celebrate our right to Life, Liberty and the Pursuit of Happiness.


About the author: Destiny Marquez has been caring for her father who has Parkinson’s for 10 years. She is the moderator for an information sharing group on Yahoo called Healing Parkinson’s.


Want to become a member of Patients For Stem Cells? Just subscribe to our blog!


 



 

Take Action by July 8th: Tell The FDA Your Stem Cells Are Not A Drug!

When you are disabled in a wheelchair, medical tourism in not a fun vacation.

When you are disabled in a wheelchair, medical tourism in not a fun vacation.

UPDATE July 10th 2013: Thank you to everyone who sent in comments to the FDA! There were only 2 before this post, in 5 days 50 new comments were added. I am in the process of following up with the CBER division of FDA to make sure our comments will be considered in the decision making process, and will update everyone on results.
————————————————————————-

The FDA has classified our own stem cells as drugs, subject to years of drug trials before we can access this life saving therapy. Disabled and seriously ill patients who have exhausted all other medical options are forced to leave the U.S. to seek cell therapy in other countries.

The public has the opportunity until July 8th 2013 to present comments to the FDA regarding regulation of adult stem cells.
Draft Guidance for Industry on Expanded Access to Investigational Drugs for Treatment Use-Questions and Answers; Availability
Docket # FDA-2013-D-0446

This draft doesn’t address stem cell therapy directly, rather it is for Investigational Drugs, since the FDA has classified stem cells as such.

Here are the steps to tell the FDA what you think

1. Find your Representative name to enter on the comment form.
Save your comment and send to your Representative too.

2. Go HERE to make your comment to the FDA. See example below.

3. For the Category question, select “Individual Consumer”, unless you fit in a different category.

Example comment (modify to reflect your interest in stem cell therapy):

I am a patient with secondary progressive MS, non-responsive to FDA approved drugs. Expanded autologous mesenchymal stem cell therapy is the only thing that has helped me.

The FDA should rescind its April 1, 2006 change to the wording of 21 C.F.R. 1271.3(d) by replacing the current term “transfer into a human” with its predecessor, “transfer into another human….”

This April 2006 change which moved autologous cell therapy into the category of Investigational Drugs should be invalid and unenforceable because it was made without giving the public notice to submit comments.

The framework to regulate autologous adult stem cells and therapies should use the same regulatory oversight currently used for in-vitro fertilization.

Alternatively, the FDA could adopt a framework similar to the European Medicines Agency (EMA) Hospital Exemption for Advanced Therapies, especially for low risk autologous cell therapies.

Source: FDA Stem Cell Regulation and the English Language: switched at birth? Mary Ann Chirba, J.D., D.Sc., M.P.H. August 11, 2011

You can track how many comments are made at the Federal Register here.

If you are new to the debate about the FDA overreach of authority in classifying our stem cells as drugs, please see The History of FDA Control of Your Body.

Thank you for your help with this important matter. People with no-option medical conditions will benefit if they can remain in the U.S. for stem cell therapy, rather than taking on the additional ordeal of long distance travel.


Want to become a member of Patients For Stem Cells? Just subscribe to our blog!