STARGARDT'S AUSTRALIA
     
 
ECHO TREATMENT FOR STARGARDT'S DISEASE
 
 

 

 

This information is provided by Macular Degeneration Support at www.mdsupport.org. One printed copy is permitted for personal use only.

Echothiophate (ECHO) Therapy Causes a Stir in the Low Vision Community
by Dan Roberts
November 2003
(Updated April 5, 2004)

A Connecticut ophthalmologist has been reporting success from a deceptively simple treatment on patients with Stargardt's disease and other non-neovascular forms of retinal disease. Dr. Gerard Michael Nolan has performed the treatment, called ECHO therapy, for nearly three years on more than 200 patients at the Nolan Eye Clinic in Farmington, Connecticut, and he is now working to locate support for FDA-approved clinical trials.
Dr. Nolan, a diplomat of the American Board of Ophthalmology, is a graduate of Georgetown Medical School and completed his residency at Cornell Medical Center in New York. In a discussion with people from the MD Support email support group in early October 2003, he said, "In the course of my ophthalmic practice, I discovered that a topical drop of dilute echothiophate (ECHO) can restore lost visual acuity in some cases of chronic retinal disease. ECHO appeared to increase the capability of the few surviving neurons, endowing this reduced population with an enhanced stimulus potential. These effects need to be studied in multi-center controlled clinical trials."

ECHO was used for 40 years for the treatment of glaucoma, but it has been replaced by better drugs for that purpose. Since it is no longer commercially available, Dr. Nolan has obtained a pharmaceutical patent and is now seeking a company to manufacture it. He has also filed an application for an FDA "new drug investigation," and contact is being made with potential research groups and funding resources. The FDA's approval is necessary, because, even though Dr. Nolan's use of diluted echothiophate is considered an off label usage of a legally marketed medication, the drug has not yet been reviewed or approved for treatment of retinal disease.
According to Dr. Nolan, the therapeutic benefits of ECHO may have previously remained hidden as the result of two key factors:

1. The dosage of the drug must be much lower than what was prescribed for glaucoma (one drop in one eye every four days, plus a drop in the other eye four days later); and
2. For best absorption, the drops must be administered before a good night's sleep.

Several people from the MD Support group are among the many who have traveled to Connecticut for ECHO therapy. Most have returned with accounts of significant and measurable improvement in their vision. In response to the positive reports of these patients, Dr. Nolan said, "I have been encouraged every step of the way by the equally important discovery of caring and committed folks such as the MD Support group. I appreciate your key role in this quest and thank you for your confidence and support."
Dr. Nolan is excited about eventually turning his work over to clinical trials. He said, "I honestly feel like I'm watching my child head off to the first day of school. I'm proud and hopeful, but whatever may happen, I'll be satisfied with the outcome and will have no regrets about my time and heart invested in this journey."

The cost of the therapy is $500, and a bottle of echothiophate costs $35. Charging for treatment in advance of clinical trials is often frowned upon in medical circles. It is, however, neither illegal nor unprecedented. Patients must also bear the expense of travel to the Nolan Eye Clinic for treatment, and then continue self-administering the eye drops at home.
MD Support will continue to follow Dr. Nolan's progress with this effort, and we will report further developments on this site as information becomes available.
To learn more about ECHO therapy, read the transcript of the MD Support community's discussion with Dr. Nolan at www.mdsupport.org/clinic/nolansession.html.
To read the continuing personal accounts of patients from the MD Support community who are undergoing the treatment, see "ECHO Therapy" in the MD Support Treatment Archives.
Dr. Nolan's yet-unpublished paper on ECHO therapy may be downloaded from www.mcglamry.net/images/StargardtsCaseStudy.doc.

UPDATE:

In a phone conversation with Dr. Gerrard Nolan by phone on April 5, 2004, this writer was given the following information about progress toward clinical trials for ECHO therapy:

1. It is likely that the FDA will meet with Dr. Nolan during the month of April 2004 to consider approval for trials.
2. It is possible, due to the work already accomplished, that the trial may be able to begin at Phase III (the final stage). This would greatly diminish the length of time and provide quicker .
3. The trial may need only 24 subjects, and recruitment will begin as soon as approval is attained.
4. A major university hospital is considering heading the research, and the relatively minimal
required funding necessary may be provided by the FDA itself.
5. Medicare and Medicaid is reimbursing for the therapy even at this pre-trial level, since echothiophate has already been FDA-approved (for glaucoma therapy), and the cost of the appointment (about $500) is viewed as testing and evaluation.

Dr. Nolan welcomes the most stringent testing of his discovery, since that is the only way to verify beyond doubt that ECHO therapy either does or doesn't work as well as it appears.

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MD Support

 


Blind World
Stargardt's.
'Miracle' drops fend off blindness.

 

April 17, 2004.

By SUSAN WOOLSEY,
Staff Writer,
McAlester News Capital & Democrat.

 

Now that her son has his sight again, Pam Roberts is e-mailing and posting messages about it all over the Internet. She has received responses from people right here in McAlester, and from around the world.

Her son, Savanna High School senior Lesley Roberts, has juvenile macular degeneration, also called Stargardt's. It is a progressive disease that eventually leads to total blindness. It's also a rare disease, one that doesn't command a lot of research dollars. In the past people with Stargardt's could only resign themselves to going blind, knowing that each day their vision was getting dimmer and dimmer.

But this isn't the 20th century anymore. This is the 21st century and people don't take answers lying down. They get up and find out all they can about something that affects them and then they take action. For Pam Roberts, that meant searching day and night on the Internet, until finally she discovered Dr. Gerard Nolan.

Dr. Nolan has an office in Connecticut and has discovered that by treating Stargardt's with Echotiophate Iodide, he can restore blood flow to his patients' eyes and they are able to see again. The medicated drops have been approved by the Food and Drug Administration as a treatment for glaucoma, but they have not been approved for Stargardt's, which means insurance won't cover the price of the visit to Dr. Nolan or the drops themselves.

The community pulled together and soon the Roberts family had enough money to go to Connecticut.

When they came back they joyously told everyone all about Les and his restored eyesight. Pam Roberts didn't forget that she had found the "miracle drops" on the Internet, so she posted an article written by the News-Capital & Democrat onto a message board for people with Stargardt's. She wanted others to know that "there is hope out there."

One of the people who heard about the message of hope is Rhonda Bourland, a woman from McAlester who has been slowly going blind since she was 15. As quickly as she could make preparations and get the money gathered together, Bourland and her husband Mike were on their way to Connecticut. "Miracle Flights paid for our tickets," she said Friday afternoon. "My husband and I had never flown before and I didn't really look at the inside of the plane on the way up there, I was so anxious to get there.

"And then, after Dr. Nolan put the drops in..." here she stopped talking for a moment, still in awe of what happened next. In a burst of enthusiasm she started wiggling in her seat and her voice poured out of her, "I didn't realize green was so green! It is absolutely marvelous! The TV! I can see all the way to the next block. Oh, my God!"

Holding up a bottle about an inch tall, she looked at it and asked "How could something so little be so powerful? It's $35 a bottle and so worth it!"

Bourland said that after the drops are placed in the eyes, they can't be opened again "for eight hours. So if you have to get up in the middle of the night, you have to remember not to open your eyes."

She puts the drops in her eyes a few times a week, then pinches the bridge of her nose so the medicine won't run down into her sinus cavities. Then it's off to sleep for eight hours. Each and every morning she wakes up and her sight is still there, and she is still in awe.

The news about Lesley Roberts' success with the drops was picked up by people from all around the world. After signing on to the Internet, people would type "Stargardt's" or "juvenile macular degeneration" into a search engine and they would discover the story that was printed by the News-Capital & Democrat.

Lesley's mother shared some of the e-mails she began to receive with this newspaper. "I just need to pass along some exciting news to you," she wrote in an e-mail. "This morning I have received two emails from people living in Turkey that read about Lesley from your article on the Internet and they are wanting to come to Connecticut to see Dr. Nolan."

The first e-mail that Roberts forwarded to this newspaper was from a young man named Emrah Gur who lives in Istanbul, Turkey. The next e-mail from Turkey came from a woman named Cumhur Ozkozaci, whose sisters have Stargardt's. Roberts said she called Dr. Nolan's office and found out that both of these people have contacted the doctor about coming to America and trying the experimental drops.

One day the phone rang in the newsroom and it was a young man named Jeff Williams from Fort Lauderdale, FL. With tears in his voice he said he had found the article on the Internet and for the first time in his life, had hope that he would not go blind, but would retain his sight. Someday, he said, he hopes to be able to see children and grandchildren, but for now he'll just settle for seeing blue skies, white clouds, green grass, the blue ocean and the faces of people he loves.

 

Copyright © 2004 McAlester News Capital & Democrat.

 

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