Where can my mother get the drug RhuFab for her advanced wet macular
degeneration? We know only of clinical trials where the risk of
getting a placebo is too great.She is willing to sign a release and
pay .Please Help

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Request for Question Clarification by voila-ga on 15 May 2003 16:02 PDT

Hello mataragas,

I'm very sorry to hear of your mother's condition.  Could you tell us
where you're located and how far she'd be willing to travel for
treatment?  Not all trials are double-blind studies.  Some are open
label with no placebo group such as Eyetech's EYE001 (Macugen), a
similar drug to Genentech's rhuFab (ranibizumab) referenced here: 
http://www.dmei.org/CTrials1.asp
http://www.eyecenters.com/brochures/armd.htm

Checking on the status of rhuFab, it appears to be in Phase III
clinical trials and not approved for sale by the FDA in the U.S. 
Before any researcher could help you further, we would need your
location.

We could certainLy look around to see if there any open label trials
on rhuFab.  Would that meet your needs?

Regards,
V

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Clarification of Question by mataragas-ga on 15 May 2003 17:48 PDT

Thank you for your quick response ! My mother lives in Port St. Lucie,
Florida which is about 50 miles north of West Palm Beach on the East
coast. She was rejected for the RhuFab clinical trials at the Bascom
Palmer Institute in Palm Beach because she had had a Kenalog (
intra-viteal steroid ) injection in August 2002 -but also because she
has advanced wet AMD and could not risk getting a placebo. The Rhufab
seems to be her only hope but she needs to get it, not a placebo. We
would greatly appreciate help in finding treatment with RhuFab--thank
you so much !!! Julianne Mataragas

Hi Julianne,

Thank you for the extra information.  Yes, I know Bascom Palmer.  It's
one of the premier ophthalmogy centers in the country.  Were they not
able to refer Mom to another clinical study for which she would be
criteria-eligible?  I've not been through a clinical trials process so
I'm not sure about continuity of care once someone is rejected for
study.

Checking on open label studies for rhuFab didn't yield anything in the
Florida area.  I did locate this study in Boston that may be of use. 
You might try e-mailing Dr. Heier for advice.
http://www.escrs.org/eurotimes/Feb2003/rhuFab.asp

Here is another possible open label clinical trial; however, it's
rhuFab V2 in combination w/verteporfin photodynamic therapy (the
Kenalog injection might prove exclusionary).
http://www.clinicaltrials.gov/ct/show/NCT00056823?order=2

Also, this item from the Wilmer Eye Institute at Johns Hopkins is very
cautious about the use of rhuFab. 
http://www.wilmer.jhu.edu/mdp/macfacts/macfacts_Sept2002_3.html

I'll only offer this information as a comment in case another
researcher can help you further, but I'll keep looking for anything
that might be of use.

Best regards,
V

Hello Paul,

Yes, our system at Google Answers leaves a bit to be desired about
getting in touch with a researcher.  I assure you it's equally
frustrating to the researchers.   Posting here is perfectly fine but I
would caution against posting an email address.  Usually any post
containing an address will be removed by the editors.  Researchers are
also not allowed to contact customers directly or their contract with
Google Answers will be cancelled.

I'm so very sorry to hear of the lack of efficacy in your wife's
treatments.  I remember this piece of research being extremely
difficult (as I'm sure you're aware) and depressing because I couldn't
find anything out there on the horizon.  It's been many months since
I've done any research on this question, so the climate may have
changed.

My situation is that I'm only able to do major research for Google
Answers on Sundays due to my other work commitments; therefore, I'd
suggest you repost your question (including all this information but
excluding your email address) and allow other researchers an
opportunity to work on assisting you sooner.  Please know that you
weren't charged for this question as it wasn't answered.  Any
researcher who comments is aware they've not given you enough
information to constitute a formal answer.  We offer ideas only in the
hopes that something will be of help in cases such as your wife's.

I'll keep a lookout for your question and I'll check into
Combretastatin and anything else that sounds promising on Sunday.  I
would, however, open your question to researchers who work for Google
Answers full-time.

Best wishes,
V

Here is some additional information on AMR:

An Open Label, Pilot (Phase I/II), Dose-Escalation Safety and
Tolerabilty Study of Combretastatin A-4 Phosphate (CA4P) in Patients
with Neovascular Age-Related Macular Degeneration (FBO-206)

In this open-label, Phase I/II, dose-escalation study, the safety and
tolerability of combretastatin administered intravenously in patients
with all forms of neovascular AMD (classic and occult) will be
assessed. The study cycle will consist of a pre-study evaluation
period (2-4 weeks), a 22-day treatment period, and an 8-week
post-treatment evaluation period. Approximately 15-20 patients will be
needed to participate in this trial. The clinical test center is
located in Baltimore, MD. All travel and accommodations will be at the
patient's expense.
http://www.oxigene.com/trial.asp

Clinical Trials (requires registration)
http://www.blindness.org/disease/clinictrials.asp?area=sr

Squalamine (Genaera):
http://www.eyesightnews.com/topic/28.html
http://www.genaera.com/pressreleases/2004_feb25.html

Cand5 (Acuity Pharmaceuticals)
http://www.acuitypharma.com/page5.html
http://www.biospace.com/news_story.cfm?StoryID=15229920&full=1

Retinal Chip Technology (Optobionics)
http://www.optobionics.com

This is about all the pro bono research I can do on this question.  If
you'd like another researcher to expand on any of these treatments,
you will need to repost your question as this one has already expired.

I hope there's something promising in this research that will help
your wife's vision.

Very best wishes,
V