In May, there will be a concert in Michigan to
raise money for CRPS/RSD awareness and research.
Mr. James, the songwriter and performer "is trying to put together
a slide show movie of people with CRPS/RSD...something that will be very moving and show the really human and very real side
of this syndrome ......I need about 60-90 pictures of people with RSDS holding up a standard white poster board from like
Staples and then painted (or a big marker)...stating something like "I've lived with RSDS for 10 years" or however long...or
"my name is so and so and RSDS affects me everyday".....you get the idea...it can say whatever they want about the disease
and how it affects them or how long they've had it or how they feel about it...or ...whatever they like to get across in the
picture...I will put them all together with music and narration to make this slide show movie...."
"So I'm requesting
...could you help me track down some of these pictures?...or ask RSDS patients that you know to send them in......Tiffany
(my friend with RSDS) has tried through forums and has not been getting a response.....Thanks for your help in advance."
U.S. Senator Jeff Bingaman (D-NM) and U.S. Representative Gene Green (D-TX)
plan to reintroduce the Ending the Medicare Waiting Period Act of 2005 when Congress returns from recess April 4. They
need your help getting original cosponsors for this important legislation. I urge you to contact your Senators and Representative
today asking for their commitment to cosponsor the Ending the Medicare Waiting Period Act of 2005.
2566, "Ending the Medicare Disability Waiting Period Act of 2004"
Senator Jeff Bingaman (D-NM) introduced S. 2566,
"Ending the Medicare
Disability Waiting Period Act of 2004," on June 23, 2004. The bill would,
over 10 years,
completely phase-out the two-year waiting period which
Americans with disabilities must endure before receiving Medicare
The legislation also creates a process by which the Secretary can
immediately waive the waiting period for
people with life-threatening
When Medicare was expanded in 1972 to include people who have significant disabilities, lawmakers created
a "Medicare waiting period." Before they can get Medicare coverage, people with disabilities must first receive Social
Security Disability Insurance (SSDI) for 24 months. Generally, SSDI begins five months after an individual's disability
has been certified. As a result, people with disabilities face three consecutive waiting period prior to getting health
coverage: (1) a determination of SSDI approval from the Social Security Administration; (2) a five-month waiting period to
receive SSDI; and, (3) another 24-month waiting period to get Medicare coverage.
Because of the 24-month Medicare waiting
period, an estimated 400,000
Americans with disabilities are uninsured and many more are underinsured at a time in their
lives when the need for health coverage is most dire (Dale and Verdier, The Commonwealth Fund, July 2003). In fact,
various studies show that death rates among SSDI recipients are highest during the first two years of enrollment (Mauney,
AMA, June 2002). For example, according to the Commonwealth Fund, 4 percent of these people die during the waiting period.
is an important exception to the 24-month waiting period and that is for individuals with amyothrophic lateral sclerosis (ALS),
also known as Lou Gehrig's disease, and for hospice services. The ALS exception passed the Congress in December 2000
and went into effect July 1, 2001.
"Ending the Medicare Waiting Period Act of 2004" would, over 10 years,
the waiting period and would also, in the interim, create a
process by which others with life-threatening illnesses, like
also get an exception to the waiting period.
As the Medicare Rights Center has said, "By forcing Americans
disabilities to wait 24 months for Medicare coverage, the current law
effectively sentences these people to inadequate
health care, poverty or
death.Since disability can strike anyone, at any point in life, the 24-month waiting period should
be of concern to everyone, not just the millions of Americans with disabilities today."
Diane Edquist Dorman
President, Public Policy
Natl. Org. for Rare Disorders
1050 17th Street NW, Suite 600
Washington, DC 20036
you do not know the name of your Senators or Representative, go to:
Celgene launches national clinical trial of Lenalidomide for CRPS
help us spread the word.
Best of health, Jim Broatch
Multicenter, Double-Blind, Placebo-Controlled Study to Evaluate
the Efficacy and Safety of Lenalidomide in the Treatment of Complex Regional Pain Syndrome Type 1
Sponsored by: Celgene
Information provided by: Celgene Corporation
This is a multicenter, double-blind,
placebo-controlled study in adult subjects with Complex Regional Pain Syndrome (CRPS) Type 1.
One hundred eighty (180)
subjects diagnosed with unilateral CRPS Type 1 will be enrolled and randomized to receive orally either 10 mg/day of lenalidomide
or placebo (90 subjects per treatment arm). For each subject, the study consists of three phases: Pre-randomization Phase
(2 weeks), Treatment Phase (12 weeks) and Extension Phase (up to 52 weeks).
Condition Treatment or Intervention Phase
Complex Regional Pain Syndrome (RSD) Type 1 Drug: Lenalidomide Phase II
MedlinePlus related topics: Reflex Sympathetic
Study Type Interventional
Study Design Multicenter, Randomized, Double-Blind, Placebo-Controlled, Single
Group Assignment, Safety/Efficacy Study.
Further Study Details
Expected Total Enrollment 180
Study completion January, 2007
Ages Eligible for Study 18 years and above
Eligible for Study Both
Age 18 years at the time of signing the informed
Understand and voluntarily sign an informed consent form
A diagnosis of CRPS Type 1 as defined by modified
International Association for the Study of Pain criteria for at least one-year duration. Unilateral involvement of a distal
limb (hand or foot) with or without proximal spread must be present. In the presence of upper and lower limb involvement,
the most severely affected limb will be designated the CRPS-affected limb.
Screening (Visit 1): CRPS pain intensity score
in the CRPS-affected limb
must be at least 4 on an 11-point (0-10) PI-NRS
Randomization (Visit 2): Average PI-NRS
score for randomization
purposes (Visit 2) will be based on AM and PM assessments made during the 7 days prior to randomization:
At least eight PI-NRS scores during this 7-day period are
Average PI-NRS score in the CRPS-affected
limb during this
period must be at least 4 on an 11-point (0-10) PI-NRS.
Measurable (by electrophysiology methods)
sural, median sensory,
median motor and peroneal motor nerves at the screening nerve
analgesics, non-opioid analgesics, non-steroidal anti-inflammatory drugs, anticonvulsants, antidepressant drugs and other
non-drug therapies may be continued provided that the subject is on stable doses/regimens for at least four weeks prior to
the start of the Treatment Phase (Visit 2).
Able to adhere to the study visit schedule and other protocol
Women of childbearing potential (WCBP) must have a negative serum or urine pregnancy test within 7 days of starting study
drug. In addition, sexually active WCBP must agree to use adequate contraceptive methods (tubal ligation; intra-uterine device;
barrier contraceptive with spermicide; or vasectomized partner) while on study drug. The use of steroid-based contraceptives
(oral, injectable or implanted) is not permitted in this study. WCBP must agree to have pregnancy tests every 4 weeks while
on study drug.
A woman of child-bearing potential is a sexually mature woman who has not undergone a hysterectomy or who
has not been naturally postmenopausal for at least 24 consecutive months (i.e., who has had menses at any time in the preceding
24 consecutive months).
The presence of any of the following will exclude a subject from study
History of deep vein thrombosis (DVT) or stroke in the past 5 years.
Documented peripheral neuropathies
to include diabetic neuropathy
and other metabolic or toxic neuropathies.
Current signs or symptoms of severe, progressive
or uncontrolled renal,
hepatic, hematological, endocrine, pulmonary, cardiac, neurological or
other serious medical condition, laboratory abnormality, or
psychiatric illness that would prevent the subject from signing
informed consent form.
White blood cell count (WBC) < 3.5 x 109 / L at Visit 1.
Bilirubin, alanine transaminase
(ALT), aspartate transaminase (AST) or
alkaline phosphatase levels more than two times the upper limit of the
range at Visit 1.
Abnormal thyroid function test values at Visit 1.
Any condition, including the presence of laboratory
which places the subject at unacceptable risk if he/she were to participate in the study or confounds the
ability to interpret data from the study.
Use of concomitant medication(s), including steroid-based
(oral, injectable or implanted) and hormone replacement
therapies which could increase the risk for developing DVT.
use of thalidomide.
Prior development of an allergic reaction/hypersensitivity while taking
development of a moderate or severe rash or any desquamation
while taking thalidomide.
Prior treatment with lenalidomide.
Location Information (United States)
Arizona Pivotal Research Centers, Peoria, Arizona 85381
Linda Institution, Loma Linda, California, 92354
UCSD Center for Pain and Palliative Medicine, La Jolla, California,
Florida Space Coast Neurology, Palm Bay, Florida 32905
Illinois Rehab Institute of Chicago, Chicago, Illinois,
Iowa University of Iowa, Iowa City, Iowa, 52242
Maryland Johns Hopkins Hospital, Baltimore, Maryland 21287
Baystate Medical Center, Springfield, Massachusetts, 01199,
Beth Israel Deaconess Medical Center, Boston, Massachusetts,
Mayo Clinic, Rochester, Minnesota 55905
Missouri Washington University Pain Management
Center, St. Louis, Missouri 63141
New York Hospital for Joint Disease, New York, New York, 10003
North Carolina Carolinas
Pain Institute, P.A. & The Center for Clinical Research, LLC,
Winston-Salem, North Carolina, 27108
University Medical Center, Durham, North Carolina, 27705
UNC Hospitals University of North Carolina, Chapel Hill,
North Carolina, 27599
Womack Army Medical Center, Fort Bragg, North Carolina 28310
Oregon Oregon Health &
Science University, Portland, Oregon, 97239
Pennsylvania Drexel University College of Medicine, Philadelphia, Pennsylvania,
Knobler Institute of Neurologic Disease, Ft. Washington, Pennsylvania, 19034
Texas Texas Tech Medical
Center, Lubbock, Texas, 79430
Virginia University of Virginia Pain Management Center, Charlottesville, Virginia,
Washington Swedish Pain Services, Seattle, Washington, 98104
Study ID Number:
Record last reviewed:
Record first received:
Authority: United States: Food and Drug Administration.
Dear All Those Impacted by RSD (People with RSD, their family, friends, community,
town leaders, etc.)
We at For Grace are urgently asking all to write letters, e-mails, and make phone calls to the
California State legislators listed below to support AB 1648, the California RSD Education bill. This bill is about to go
before (2-3 weeks) their Assembly Health committee for a hearing and vote-- and we desperately need your voice to enable its
passage. It has been brought to our attention it is imperative that these legislators here from the RSD community-- or this
bill stands a good chance of dying. Please don't allow this to happen--PLEASE TAKE ACTION NOW.
The California RSD Education
bill (bill text provided below) was introduced on the Capitol floor, February 22nd, by Assemblywoman Fran Pavley. This bill,
if passed, will fund an RSD awareness campaign through the state's Department of Health Services, targeting education to healthcare
professionals and the general public. Once implemented, this RSD education campaign will provide crucial information to enable
earlier recognition of the disease, better, faster medical interventions-- and ultimately, save many lives from the terrible
ravages of unchecked, unmanaged RSD.
You don't have to be a California resident to act. ALL RSD voices from ALL over
the country can send a clear, firm and absolute message to these legislators that this bill is necessary for a better tomorrow
for those impacted by RSD. If this bill passes in California, it will help pave the way for similar bills throughout the country!
Please call, write or e-mail the CA legislators below, stating your support of AB 1648 and urging a "YES"
vote for its passage in their Assembly Health committee. We have provided a letter sample (written by RSD'er Toni Amarel of
Folsom, CA) as a guide. Also, if possible, please cc: all correspondence to our legislative liaison, Tamara Odisho (her contact
information is listed below), so we can keep a record of the response.
Co-sponsors for AB 1648 lined up to date are
the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA), the American Chronic Pain Association (ACPA), the American
Pain Foundation (APF), the Southern California Cancer Pain Initiative (SCCPI) and the Inter-Cultural Cancer Caucus (ICCC).
Please take action now-- and please share this message with everyone you know who can support you in this effort.
The more voices heard-- THE BETTER...
THANK YOU all for helping us realizing "the dream of never again",
Founder/Spokesperson, For Grace
President, For Grace
to send letters of support to (via e-mail, fax or phone)....
These are the 13 State Assembly Health Committee
Members which need to be contacted now. Sending letters, e-mails and/or calls directed to their District Office as well as
their Capitol Office is a good idea.
(D) Wilma Chan - Chair of the Health Committee
P.O. Box 942849
Sacramento, CA 94249-0016
(916) 319-2016/ Fax: (916) 319-2116
1515 Clay Street
Oakland, CA 94612
(510) 286-1670/ Fax: (510) 286-1888
Assemblymember.Chan@assembly.ca.gov(D) Patty Berg
PO Box 942849
Ph: (916) 319-2001/Fax: (916) 319-2101
50 "D" Street, Suite 450
Rosa, CA 95404
Ph: (707) 576-2526/Fax: (707) 576-2297
Assemblymember.Berg@assembly.ca.gov(D) Rebecca Cohn
P.O. Box 942849
Sacramento, CA 94249-0024
(916) 319-2024/ Fax: (916) 319-2124
100 Paseo De San Antonio, Suite 319
San Jose, CA 95113
Ph: (408) 282-8920/ Fax: (408) 282-8927
Assemblymember.Cohn@assembly.ca.gov(D) Mervyn Dymally
PO Box 942849
Ph: (916) 319-2052
322 W. Compton Boulevard
Ph: (310) 223-1201
Assemblymember.Dymally@assembly.ca.gov(D) Dario Frommer
P.O. Box 942849
Sacramento, CA 94249-0043
Fax: (916) 319-2143
620 N. Brand Boulevard, Suite 403
Glendale, CA 91203
Fax: (818) 240-4632
Assemblymember.Frommer@assembly.ca.gov(D) Mike Gordon
P.O. Box 942849
Sacramento, CA 94249-0053
1700 East Walnut Avenue
El Segundo, CA 90245
Assemblymember.Gordon@assembly.ca.gov(D) Dave Jones
P.O. Box 942849
Sacramento, CA 94249-0009
915 "L" Street, Suite 110
Sacramento, CA 95814
(916) 327-3338 fax
Assemblymember.Jones@assembly.ca.gov(D) Cindy Montanez
11541 Laurel Canyon Boulevard, Ste. C
Hills, CA 91345
Ph: (818) 838-3939/Fax: (818) 838-3931
State Capitol, Room
Sacramento, CA 95814
Ph: (916) 319-2039/Fax: (916) 319-2139
Assemblymember.Montenez@assembly.ca.gov(D) Gloria Negrete McLeod
4959 Palo Verde Street, Suite 100B
Montclair, CA 91763
Fax: (909) 621-7483
P.O. Box 942849
Sacramento, CA 94249-0061
Fax: (916) 319-2161
Assemblymember.McLeod@assembly.ca.gov(R) Greg Aghazarian - Vice Chair of the Health Committee
Sacramento, CA 95814
Fax: (916) 319-2126
Stockton District Office
4557 Quail Lakes Dr.,
Assemblymember.Aghazarian@assembly.ca.gov(R) Alan Nakanishi
State Capitol, Room 5175
P.O. Box 942849
Phone: (916) 319-2010
Fax: (916) 319-2110
Lodi District Office
218 W. Pine Street
Phone: (209) 333-5330
Fax: (209) 333-5333
Assemblymember.Nakanishi@assembly.ca.gov(R) Keith Richmond, Dr.
State Capitol Room 5128
Sacramento, CA 94249-0038
Granada Hills District Office
10727 White Oak Ave.
Phone: (818) 368-3838
Fax: (818) 885-3307
Assemblymember.Richmond@assembly.ca.gov(R) Audra Strickland
Sacramento, CA 94249-0037
Fax: (916) 319-2137
Westlake District Office
2659 Townsgate Road,
Assemblymember.Strickland@assembly.ca.govPlease CC: letters and e-mails of support to:
address: Tamara.Odisho@asm.ca.govLegislative Aide
Office of Assemblymember Fran Pavley
Sample Letter (drafted by RSD'er Toni Amarel
of Folsom, CA, www.toni-crps.com ):
Assemblyperson (insert name of legislator
you're sending letter to)
City, State, Zip
Dear Assemblymember (insert here last name
On February 22nd, the Reflex Sympathetic Dystrophy (RSD) Education Bill (AB 1648) was introduced. Please
vote "Yes" on this very important health bill for our golden state when it comes up for a vote before your health committee.
estimated 1.5 to 6 million Americans suffer from the devastating effects RSD. Yet, RSD remains virtually unheard of. What
is RSD? RSD is a progressive neurological disease with constant chronic pain as its main symptom. Furthermore, it is a debilitating
disease that if left untreated can spread to all parts of the body leaving the patient completely disabled. If diagnosed early
and with appropriate medical care, it can be successfully treated. However, most patients have extreme difficulty getting
a timely diagnosis. Why? Because, the medical community as a whole is not educated about what causes RSD or how to diagnosis
and successfully treat it.
Anyone, young or old can get RSD. (Here, please insert a brief discription of your RSD
experience-- 3 to 4 sentences at the most) (Here's what Toni wrote...) I have personally suffered with RSD since 1998 and
this disease has wreaked havoc on my life. My family and I have suffered from extreme financial hardships due to mounting
medical costs, prolonged family disruption, social isolation, diminished quality of life, depression and anxiety. The sad
reality is that if I had received early diagnosis and appropriate treatment I could have been cured. Instead, I will endure
of lifetime sentence with RSD.
Education is the key to successful diagnosis and treatment of RSD. No one should have
to suffer a lifetime of excruciating pain from RSD. RSD can be successfully treated and at times put into remission. We must
educate our medical community and our population about RSD so as to prevent RSD from claiming the life of another person.
We must act now to pass the RSD Education Bill.
I urge you, as stewards of our golden state, to vote yes on the RSD
Education Bill. Your yes vote will be the first step in educating our medical community and California's population about
(How long you've had RSD, i.e., RSD since 1998)
of California RSD Education Bill:
BILL NUMBER: AB 1648 INTRODUCED
INTRODUCED BY Assembly Member
(Principal coauthors: Senators Escutia and Soto)
(Coauthors: Assembly Members Dymally, Goldberg, Hancock, Oropeza,
Senators Figueroa and Kuehl)
FEBRUARY 22, 2005
An act to add Chapter 5.5 (commencing with Section 104307) to
1 of Division 103 of the Health and Safety Code, relating to health,
and making an appropriation therefor.
AB 1648, as introduced, Pavley. Reflex sympathetic dystrophy.
Under existing law the State
Department of Health Services
conducts a program for the control of high blood pressure and
maintains a program for
the prevention of blindness.
This bill would require the department to establish and implement
the Reflex Sympathetic
Dystrophy Education and Research Program.
This bill would establish the continuously appropriated Reflex
Dystrophy Fund for the purposes of this bill.
Vote: majority. Appropriation: yes. Fiscal committee: yes.
local program: no.
THE PEOPLE OF THE STATE OF CALIFORNIA DO ENACT AS FOLLOWS:
SECTION 1. This act shall
be known and may be cited as the Reflex
Sympathetic Dystrophy Education and Research Program Act.
SEC. 2. The Legislature
finds and declares the following:(a)
Reflex sympathetic dystrophy (RSD), also know as complex regional
pain, is a debilitating
and progressively chronic condition
characterized by severe burning pain, pathological changes in bone
and skin, excessive
sweating, tissue swelling, and extreme
sensitivit! y to touch.
(b) More specifically, RSD is thought to be a nerve disorder
generally occurs at the site of a minor or major trauma injury, but
may also occur without an apparent injury to
the afflicted person.
(c) While the causes of RSD are unknown, it is thought to be the
result of damaged nerves of the
sympathetic nervous system.
(d) The disorder is unique in that it simultaneously affects the
nerves, skin, muscles,
blood vessels, and bones, and if untreated,
can result in permanent deformity and chronic pain.
(e) RSD is often misdiagnosed
because this condition is either
unknown or is poorly understood; the prognosis for patients suffering
from RSD is generally
much better when the condition is identified
and treated as early as possible, ideally within three months of
the first symptoms.
(f) If treatment is delayed, the disorder can quickly spread to
! the entire limb, and changes in
bone and muscle may become
irreversible, resulting in limited mobility, atrophy of the muscles,
and eventual permanent
disability of patients.
(g) Since a delay in diagnosis or treatment for this debilitative
condition can result in severe
physical and physiological problems,
and early recognition and prompt treatment of RSD provides the
for recovery, it is in the best interest of the
public to establish a program to educate both individuals and medical
regarding this debilitative condition and to promote
research to accurately identify, diagnose, and treat RSD.
3. Chapter 5.5 (commencing with Section 104307) is added to
Part 1 of Division 103 of the Health and Safety Code , to read:
5.5. REFLEX SYMPATHETIC DYSTROPHY EDUCATION AND
104307. (a) The department s! hall establish a Reflex Sympathetic
Education and Research Program. (b) For purposes of this
chapter, "RSD" means reflex sympathetic dystrophy. Reflex sympathetic
is a debilitating and progressively chronic condition
characterized by severe burning pain, pathological changes in bone
skin, excessive sweating, tissue sweating, tissue swelling, and
extreme sensitivity to touch.
(c) The purpose of the
program established under this chapter
shall be to promote public awareness of the causes of RSD, the value
detection and diagnosis and possible treatments, and to
promote research, through public and private resources, to accurately
diagnose, and treat reflex sympathetic dystrophy.
104308. In implementing the program established under this
the department shall do all of the following: (a) Establish
a public education and outreach campaign, through written materials,
and the department's Web site, to promote RSD education,
that will enable individuals to make informed decisions about
health, including, but not limited to, the following elements:
(1) The cause and nature of RSD.
(2) The risk
factors that contribute to the manifestation of RSD.
(3) Available treatment options, including risks and benefits
(4) Environmental safety and injury prevention.
(5) Rest and use of appropriate body mechanics.
The availability of RSD diagnostic, treatment, and outreach
services in the community.
(7) Any other factors or elements
that might mitigate the effects
(b) Develop educational materials and brochures and make them
(c) Coordinate, promote, and offer professional education
programs, ! through institutions of higher education,
for health care
providers and health-related community-based organizations,
including, but not limited to, the following:
(2) The cause and nature of RSD.
(3) RSD risk factors, including, but not limited to, lifestyle,
and drug interactions.
(4) The diagnostic procedures and appropriate indications for
(5) Medical and surgical
treatment options, including experimental
and established drug therapies, and the risks and benefits of each
Environmental safety and injury prevention.
(7) The availability of RSD diagnosis and treatment and support
in the community.
(d) Promote research, through both private and public funding
sources, to accurately identify, diagnose,
and treat RSD.
104309. (a) The Reflex Sy! mpathetic Dystrophy Fund is hereby
established in the State Treasury. Notwithstanding
Section 13340 of
the Government Code, all moneys in the fund are hereby continuously
appropriated to the department,
without regard to fiscal years, for
the purpose of funding this chapter.(b) The department may seek and
awards, and other funds not derived from the General
Fund for the implementation of this chapter, and shall deposit any
received pursuant to this section into the fund for
expenditure for the purposes of this chapter.
104309.5. This chapter
shall be implemented only to the extent
funds from federal or private sources are made available for this
An organization dedicated to raising awareness of
Reflex Sympathetic Dystrophy
Studio City, California 91614