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FINANCIAL AND MEDICATION ASSISTANCE RESOURCES

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• Medication Assistance Resources
• Education Resources
• Free or Reduced Cost Medical Care
• Cancer Financial Support
• Travel Assistance and Recreation Resources

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MEDICATION ASSISTANCE RESOURCES

*If you can not find a patient assistance program for your medication, try contacting the manufacturer of the drug for possible program opportunities or financial assistance.

NORD’s Patient Assistance Programs help patients obtain life-saving or life-sustaining medication they could not otherwise afford.

NeedyMeds is a 501(c)(3) nonprofit with the mission of helping people who cannot afford medicine or health care costs. The information at NeedyMeds is available anonymously and free of charge.

RxAssist offers a comprehensive database of patient assistance programs, as well as practical tools, news, and articles so that health care professionals and patients can find the information they need. Patient assistance programs are run by pharmaceutical companies to provide free medications to people who cannot afford to buy their medicine.

The Abigail Alliance is committed to helping create wider access to developmental cancer drugs and other drugs for serious life-threatening illnesses. The Alliance is promoting creative ways of increasing expanded access and compassionate use programs and working to help promote creative ideas to get promising new drugs to the market sooner.

Care Connect USA has assembled a free list of family relief hotlines for financial assistance in critical categories. Some of these hotlines are government agencies, and some are privately administered. All have met there standards of practice, and are monitored for continued effectiveness.

Edmund Hayes provides a Newsletter, Blog and Web Page designed to support, not replace, the relationship that exists between a patient/site visitor and his/her physician. The list contains the name and telephone numbers of companies that have indigent programs in place.

Healing the Children works to heal children with burn injuries, cleft palates and other deformities whose families don't have access to or cannot afford treatment.

The HealthWell Foundation is a 501(c)(3) non-profit organization established in 2003 that is committed to addressing the needs of individuals with insurance who cannot afford their copayments, coinsurance, and premiums for important medical treatments.

Hill-Burton Free and Reduced Cost Health Care provides a reasonable volume of services to persons unable to pay for hospitals, nursing homes and other health facilities, and to make their services available to all persons residing in the facility’s area.

The National Alliance on Mental Illness (NAMI) compiled a list of free or low-cost mental health medications provided by pharmaceutical companies.

The National Human Genome Research Institute provides some resources for finding information on financial aid for medical treatment, although it is not authorized to provide routine medical assistance or treatment funds.

The Patient Advocate Foundation (PAF) Co-Pay Relief Program (CPR) currently provides direct financial support to insured patients, including Medicare Part D beneficiaries, who must financially and medically qualify to access pharmaceutical co-payment assistance.

The Patient Access Network (PAN) Foundation was founded in October 2004 as a solution to help the underinsured access the health care they so desperately need to continue living a relatively normal and productive lifestyle.

Patient Services, Inc. (PSI) provides peace of mind to patients living with specific chronic illnesses by: locating health insurance in all 50 states, subsidizing the cost of health insurance premiums, providing pharmacy and treatment co-payment assistance, assisting with Medicare Part D Co-insurance, and helping with advocacy for Social Security Disability.

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EDUCATION RESOURCES

The College Board is a not-for-profit membership association whose mission is to connect students to college success and opportunity. The College Board is committed to the principles of excellence and equity, and that commitment is embodied in all of its programs, services, activities and concerns.

Educational Equity Center at AED develops programs and materials that promote bias-free learning in school and after school. We provide professional development, consulting services, and community partnerships.

Federal Student Aid, an office of the U.S. Department of Education, plays a central and essential role in America's postsecondary education community. Our core mission is to ensure that all eligible individuals benefit from federal financial assistance—grants, loans and work-study programs—for education beyond high school.

FinAid was established in the fall of 1994 as a public service. This site has grown into the most comprehensive source of student financial aid information, advice and tools -- on or off the web.

Learning Disabilities Association of America creates opportunities for success for all individuals affected by learning disabilities and to reduce the incidence of learning disabilities in future generations.

The National Center for Learning Disabilities (NCLD) works to ensure that the nation's 15 million children, adolescents, and adults with learning disabilities have every opportunity to succeed in school, work, and life.

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FREE OR REDUCED COST MEDICAL CARE

The National Association of Free Clinics (NAFC) is the only nonprofit 501c(3) organization whose mission is solely focused on the issues and needs of the more than 1,200 free clinics and the people they serve in the United States.

Shriners Hospitals for Children® is a health care system of 22 hospitals dedicated to improving the lives of children by providing pediatric specialty care, innovative research, and outstanding teaching programs for medical professionals. Children up to age 18 with orthopaedic conditions, burns, spinal cord injuries, and cleft lip and palate are eligible for care and receive all services in a family-centered environment, regardless of the patients’ ability to pay.

St. Jude Children’s Research Hospital’s mission is to advance cures, and means of prevention, for pediatric catastrophic diseases through research and treatment. No child is denied treatment based on race, religion or a family's ability to pay.

Texas Scottish Rite Hospital for Children is a world leader in the treatment of pediatric orthopedic conditions. We strive to improve the care of children worldwide through innovative research and teaching programs, training physicians from around the world.

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CANCER FINANCIAL SUPPORT

The Cancer Financial Assistance Coalition helps cancer patients experience better health and well-being by limiting financial challenges, through: facilitating communication and collaboration among member organizations; educating patients and providers about existing resources and linking to other organizations that can disseminate information about the collective resources of the member organizations; advocating on behalf of cancer patients who continue to bear financial burdens associated with the costs of cancer treatment and care.

Cancer Care is an organization that provides professional support services to anyone affected by cancer. CancerCare programs—including counseling and support groups, education, financial assistance and practical help—are provided by professional oncology social workers and are completely free of charge.

Lance Armstrong Foundation works to identify the issues faced by cancer survivors in order to comprehensively improve quality of life for members of the global cancer community.

The Leukemia & Lymphoma Society Co-Pay Assistance Program helps you pay your insurance premiums and meet co-pay obligations. We'll also help you find additional sources of financial help.

The National Cancer Institute is part of the National Institutes of Health, and supports and coordinates research projects conducted by universities, hospitals, research foundations, and businesses throughout this country and abroad through research grants and cooperative agreements. They also collect and disseminate information on cancer.

The American Cancer Society’s Road to Recovery Program provides free transportation for cancer patients. Cancer patients receiving treatment at a nearby hospital or medical facility can get free transportation to and from their treatment site. The American Cancer Society’s Road to Recovery program is a free service for cancer patients who lack transportation.

Cancer Legal Resource Center is a national, joint program of the Disability Rights Legal Center and Loyola Law School Los Angeles. The CLRC provides free information and resources on cancer-related legal issues to cancer survivors, caregivers, health care professionals, employers, and others coping with cancer.

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TRAVEL ASSISTANCE AND RECREATION RESOURCES

The National Patient Travel HELPLINE provides information about all forms of charitable, long-distance medical air transportation and provides referrals to all appropriate sources of help available in the national charitable medical air transportation network.

Patient AirLift Services arranges free air transportation based on need to individuals requiring medical care and for other humanitarian purposes.

TSA Cares is a helpline to assist travelers with disabilities and medical conditions. TSA recommends that passengers call 72 hours ahead of travel to for information about what to expect during screening.

Double "H" Hole in the Woods Ranch provides specialized programs and year-round support for children and their families dealing with life-threatening illnesses.

New Directions for people with disabilities, inc. is a 501(c)(3) non-profit organization providing high quality local, national, and international travel vacations and holiday programs for people with mild to moderate developmental disabilities.

The Association of Hole in the Wall Camps is an international family of camps and programs that provide life-changing experiences to children with serious medical conditions, always free of charge.  Their goal is to extend these experiences to as many children as possible around the world.

Hospitality Homes provides temporary housing in volunteer host homes and other donated accommodations for families and friends of patients seeking care at Boston-area medical centers.

The National Association of Hospital Hospitality Houses supports homes that help and heal to be more effective in their service to patients and families.

http://www.medscape.com/viewarticle/822946?nlid=53363_2743&src=wnl_edit_dail&uac=179920ST

WebMD Health News

Legalize Medical Marijuana, Doctors Say in Survey

R. Scott Rappold

April 02 2014

EDITORS' RECOMMENDATIONS

• Medical Marijuana: What the Research Shows
• Medical Marijuana State Action in 2014

A majority of doctors say that medical marijuana should be legalized nationally and that it can deliver real benefits to patients, a new survey by WebMD/Medscape finds.

WebMD’s web site for health professionals surveyed 1,544 doctors as more than 10 states consider bills to legalize medical marijuana. It is already legal in 21 states and Washington, DC.

The survey found solid support for those legalization efforts, with most doctors saying medical marijuana should be legal in their states. They agreed that medical marijuana should be an option for patients. The survey included doctors from more than 12 specialties and 48 states.

Marijuana's Perceived Health Benefits

Solid data on marijuana’s health benefits are lacking. Research has been limited because the federal government has designated marijuana as a “Schedule I” substance, a designation used for the most dangerous drugs having “no accepted medicinal use and a high potential for abuse.”

But as state after state legalizes marijuana, doctors have gained nearly 2 decades of anecdotal evidence about its effects. Dramatic stories about families moving to Colorado for a special strain of marijuana to treat their children’s seizure disorders have led to stronger calls for research.

The Epilepsy Foundation recently called on the Drug Enforcement Administration to relax its restrictions on marijuana so that it can be properly studied, as did two prominent epilepsy researchers in a recent New York Times op-ed.

“The medical community is clearly saying they support using marijuana as a potential treatment option for any number of medical problems. In fact, many doctors already prescribe it. But health professionals are still unclear as to what the long-term effects may be. The findings would indicate a strong desire to have the DEA ease the restrictions on research so that additional studies can be done to conclusively show where medical marijuana can help and where it might not,” says WebMD Chief Medical Editor Michael W. Smith, MD.

In addition to seizure disorders, medical marijuana is often used to treat chronic pain from injuries or medical conditions such as cancer, nausea from medication, and multiple sclerosis.

Doctors' Responses

Here’s a look at the survey numbers for doctors asked about medical marijuana:

• 69% say it can help with certain treatments and conditions.
• 67% say it should be a medical option for patients.
• 56% support making it legal nationwide.
• 50% of doctors in states where it is not legal say it should be legal in their states.
• 52% of doctors in states considering new laws say it should be legal in their states.

The difference in support between doctors who say it should be a medical option for patients vs. those who support legalization could stem from their views toward national or local control. Also, doctors may prefer that medical marijuana use be driven by FDA guidelines.

Support for medical marijuana also varied by specialty. Oncologists and hematologists showed the highest level, with 82% saying marijuana delivers real benefits to patients. These specialties are also the most likely to say that marijuana should be a medical option for patients (82%). Medical marijuana is used to treat cancer pain, nausea related to chemotherapy, and to stimulate appetite.

Rheumatologists ranked the lowest on that question, with 54% saying it delivers benefits. Marijuana may help arthritis pain and inflammation but it is not commonly used.

Neurologists reported the highest number of patients asking if medical marijuana might help them (70%). Marijuana may help multiple sclerosis and severe seizure disorders. Oncologists and hematologists had the second highest level of patient inquiries with ophthalmologists coming in third. Medical marijuana can help relieve eye pressure with glaucoma but doesn’t work as well as other medications.

“One of the most documented uses of medical marijuana is in the treatment of pain. Medical marijuana may be a better painkiller than narcotic painkillers, like oxycodone, with less potential for addiction,” says Smith. “More research will help us better understand how best to use medical marijuana in the treatment of many conditions that cause chronic pain.”

Consumers' Responses

A survey of consumers on WebMD had similar levels of support for medical marijuana among the general public. Among 2,960 surveyed:

• 50% support making it legal nationwide.
• 49% of consumers in states where it is not legal say it should be legal in their states.
• 52% say it can help with treatments and conditions.
• 45% say the benefits outweigh the risks.

Most doctors and consumers surveyed oppose legalizing recreational marijuana nationally.

Colorado’s first stores selling marijuana for recreational use opened Jan. 1, and similar stores will open in Washington state later this year. Close to half of survey respondents say they disagree with those states’ decisions.

WebMD’s survey was completed by 2,960 random site visitors from Feb. 23 to 26, 2014. It has a margin of error of +/- 1.8%. Medscape’s survey was completed from Feb. 25 to March 3, 2014 by 1,544 doctors who are members of Medscape’s panel, representing more than 12 specialty areas. It has a margin of error of +/- 2.5%.

SOURCES:

Gallup: "For the first time, Americans favor legalizing marijuana."

WebMD: "Marijuana – recreational and medical – what the patient thinks – what the doctor says."

USA Today: "Which states have legalized medical marijuana?"

Medscape: "Colorado Family Physicians' Attitudes Toward Medical Marijuana

Orphanet: Arachnoiditis

Orphanet: Arachnoiditis

Arachnoiditis

Orpha number ORPHA137817 Synonym(s) Adhesive arachnoiditis Chronic arachnoiditis Prevalence Unknown Inheritance Sporadic Age of onset Variable

ICD-10 - OMIM 182950 UMLS C0003708 MeSH D001100 MedDRA 10003074 SNOMED CT 8217007

SUMMARY

Arachnoiditis (ARC) is a chronic inflammation of the arachnoid layer of the meninges, of which adhesive arachnoiditis is the most severe form, characterized by debilitating, intractable neurogenic back and limb pain and a range of other neurological problems.

The prevalence is unknown. About 25,000 cases of arachnoiditis occur each year, mostly in North and South America, Asia and Europe, where spinal operations are more prevalent.

Patients present with chronic, persistent deafferentiation pain in the lower back, limbs and trunk that is increased by activity, hyporeflexia, loss of temperature sensation, numbness, and often widespread allodynia, dysesthesia and hyperpathia. Patients may also experience proprioception alterations (including loss of balance, tinnitus and reduced hearing and vision), motor weakness, muscle cramps, fasciculation, anhydrosis, and bladder, bowel and sexual dysfunction. Arachnoiditis may, in a minority of cases, involve the brain as well as the spinal cord, possibly causing communicating hydrocephalus.

Arachnoiditis can be mechanically (localized) or chemically (diffuse) induced, and is often associated with spinal operations (60% of cases), neuroaxial (spinal and epidural) anesthesia (22%), spinal taps (7%), myelography (3%), pain relief procedures and secondary infections. It can also be caused by bacterial and viral spinal infections (7%) and repeated subarachnoid injections of anticancer drugs or antimetabolites. Syringomyelia, cauda equina syndrome, pseudomeningoceles, intrathecal cysts or tethering of the spinal cord and nerve roots (NR) may complicate lumbosacral arachnoiditis. Arachnoiditis occurs as a progression of inflammatory changes. In the early (inflammatory) phase NR are edematous (enhanced), while in the late proliferation stage (adhesive arachnoiditis) NR are clumped and asymmetric. The flow of cerebrospinal fluid from the distal dural sac to the brain is impeded, intrathecal pressure increases and this causes back pain and postural headache. In some cases the scar tissue calcifies (arachnoiditis ossificans).

Diagnosis is based on patient history, clinical presentation and a causative event, and can be confirmed by MRI with contrast. When MRI is not possible, myelogram followed by CT scan is indicated. The adhesions generally occur on the dorsal segments, are arranged peripherally, and have been described as looking `like the bark of a tree' when viewed by myelography.

Differential diagnoses include intra-spinal hematoma or dislodged disc fragment if the condition presents immediately after surgery, and Failed Back Surgery Syndrome (FBSS). Some patients are diagnosed with fibromyalgia (see this term), but these symptoms are likely to occur as a secondary feature due to the altered spinal dynamics.

In the early phase, treatment includes large doses of IV methylprednisolone for five days, preferably within three months of the causative injury, followed by a protocol directed to control neuropathic pain using a multimodal approach that includes an anti-inflammatory, an anticonvulsant and an antidepressant. Large doses of opiates, that can cause hyperalgesia, hypersensitivity and tachyphylaxis, and lead to dependence, should be discouraged. If necessary, to treat exacerbation ``flare-ups'', IV infusions of NMDA receptors antagonists (including lidocaine, MgSO4, ketamine) can be given.

Once the proliferative stage has begun, arachnoiditis will be permanent and is complicated by the aging process of the spine. Operations, injections or any other invasions of the spine may exacerbate the disease significantly.

Expert reviewer(s)

• Pr Antonio ALDRETE

Last update: March 2010

Orphanet: Perineural cyst Tarlov cyst

Orphanet: Perineural cyst Tarlov cyst

Perineural cyst

Orpha number ORPHA65250 Synonym(s) Tarlov cyst Prevalence Unknown Inheritance Sporadic Age of onset Adulthood

ICD-10 G54.8 OMIM - UMLS - MeSH - MedDRA - SNOMED CT -

SUMMARY

Perineural (or Tarlov) cysts are cerebrospinal fluid-filled nerve root cysts most commonly found at the sacral level of the spine, although they can be found in any section of the spine, which can cause progressively painful radiculopathy.

The annual incidence of perineural cysts is estimated at approximately 5%, although large cysts that cause symptoms are relatively rare with annual incidence estimated at less than 1/2,000. Women are affected more frequently than men.

Patients with perineural cysts present with pain in the area of the nerves affected by the cyst, muscle weakness, difficulty sitting for prolonged periods, loss of sensation, loss of reflexes, pain when sneezing or coughing, swelling over the sacral area, parasthesias, headaches, sciatica, and bowel, bladder and sexual dysfunction. The cysts typically occur along the posterior nerve roots and can be valved or nonvalved. The main feature that distinguishes perineural cysts from other spinal lesions is the presence of spinal nerve root fibres within the cyst wall or in the cyst cavity.

There are a number of conditions that can cause the cysts to become symptomatic, including traumatic injury, heavy lifting, childbirth, epidurals, and trauma to the spinal cord. It has also been observed that the herpes simplex virus can cause the body chemistry to change and that perineural cyst symptoms worsen during herpes virus outbreaks.

Diagnosis is based on magnetic resonance imaging (MRI), computed topography (CT) or myelogram of patients experiencing lower back pain or sciatica.

The main differential diagnoses are meningeal diverticula and long arachnoid prolongations, which can be distinguished by rapid filling on myelography compared to the delayed filling of perineural cysts. Differential diagnoses also include herniated lumbar discs, arachnoiditis and, in females, gynecological conditions.

The majority of perineural cysts are sporadic. However, in some cases cysts have been observed among relatives, suggesting the possibility of a familiar trait with autosomal transmission.

Treatment involves lumbar drainage of the cerebrospinal fluid, CT scanning-guided cyst aspiration, decompressive laminectomy, cyst and/or nerve root excision and microsurgical cyst fenestration and imbrications. However, surgical treatment for perineural cysts is complicated by postoperative pseudomeningocele and intracranial hypotension, and recurrence of the cyst. Pain therapy may offer a nonsurgical alternative for the treatment of symptomatic perineural cysts.

Those who have progressive and prolonged symptoms may experience neurological damage if the cysts continue to compress nerve structures.

Expert reviewer(s)

• Dr A CARLUCCIO
• Pr Antonio FEDERICO
• Dr D MARINO

Last update: February 2010

Sharon Dublin Ireland, Tarlov cyst Disease Patient

• tarlovcysteurope@groups.facebook.com
• https://www.facebook.com/groups/tarlovcysteurope/
• Hi Ya,
• I would just like to say, as a Tarlov cyst Patient, from Dublin Ireland, I was diagnosed in 2000, 
• I have been active on the internet since 2002 researching and educating myself about Tarlov cyst Disease, I often share articles here, on the Blog related to Tarlov cysts Arachnoiditis, Chronic Pain and anything related to both, 
• I started a Facebook group for Europeans the links are above,I would love for anyone from Europe to join share any information they might have about Drs, Pain Specialists etc etc in your Part of the woods or just to get to know each other. Like you who are in the same situation, 
• I also am involved with a Yahoo support Group for many Years, tarlovcystsurvival@yahoogroups.com Its a wonderful Worldwide Support Group, 
• 
  
• You are Not alone with this Rare Disease,
• Best Wishes
• Sharon xx soft hugs xx
• Dublin Ireland
• You can contact me anytime s_gillece@hotmail.com
• 00353 1 8338196 home
• 00353 86 8556557 mobile,

Critics Oppose FDA Approval of Painkiller Zohydro

http://www.webmd.com/pain-management/news/20140226/new-painkiller-zohydro-criticized

Feb. 27, 2014 -- A new narcotic painkiller is due to come on the market in March, and critics want the FDA to reverse its approval of the drug, Zohydro ER. They claim it could become the nextOxyContin, another opioid that’s become a popular drug of abuse.

Critics of the FDA's ruling include attorneys general from 28 states and FED UP!, a union of consumer groups, addiction treatment providers, drug and alcohol prevention programs, and other interested groups. They have petitioned FDA Commissioner Margaret Hamburg, MD, to prevent Zohydro from coming on the market. The FDA approved the drug even though its advisory committee voted 12 to 2 against approval.

"I firmly believe that the benefits of this product outweigh its risks," the FDA’s Bob Rappaport, MD, wrote in the summary review explaining why he approved Zohydro last October. Rappaport is director of the FDA's Division of Anesthesia, Analgesia, and Addiction Products. "Many patients in the U.S. suffer from untreated or poorly treated chronic pain. Further limiting access to potential treatments is not the answer when new treatments are critically needed.”

Opioids are a man-made type of narcotic pain medication. They subdue the central nervous system, ease pain, and induce sleep. They can have serious side effects if not used properly.

Here are some commonly asked questions about Zohydro, made by Zogenix, a San Diego company.

Q. Why do people want the FDA to reverse its approval of Zohydro?

A. Zohydro is too easy to abuse, critics say. It is the only approved extended-release product that contains the man-made opioid hydrocodone. It will be available in doses as high as 50 milligrams per pill -- five times the amount in immediate-release hydrocodone pills. Even though it is meant to release hydrocodone slowly over 12 hours, the pill could be tampered with to release a large dose all at once, says Andrew Kolodny, MD, co-founder of the group Physicians for Responsible Opioid Prescribing.

Two members of the FDA’s controlled substance staff warned about the potential for abuse in materials presented to the advisory committee. “If approved and marketed, Zohydro ER will be abused, possibly at a rate greater than that of currently available hydrocodone combination products,” wrote medical officer Lori Love, MD, PhD, and pharmacologist James Tolliver, PhD.

Zogenix is “currently evaluating two different technologies to ensure we develop the most effective formulation to minimize misuse and abuse,” says company spokeswoman Julie Normart. The company is also taking other actions to lower the risk of abuse, according to a statement supplied by Normart. These include locking pill bottle caps and an external “safe-use board” made up of experts in abuse, misuse, and diversion.

Jason Jerry, MD, an addiction specialist at the Cleveland Clinic, questions why Zogenix doesn’t wait to introduce Zohydro until they develop a version of it that's harder to abuse. “I’m not sure why there’s this great rush to get this to market,” Jerry says.

FDA approves extended-release, single-entity hydrocodone product

http://www.fda.gov/newsevents/newsroom/pressannouncements/ucm372287.htm

FDA NEWS RELEASE

For Immediate Release: Oct. 25, 2013
Media Inquiries: Morgan Liscinsky, 301-796-0397; morgan.liscinsky@fda.hhs.gov 
Consumer Inquiries: 888-INFO-FDA
FDA approves extended-release, single-entity hydrocodone product
First to have updated labeling now required for all ER/LA opioid analgesics

The U.S. Food and Drug Administration today approved Zohydro ER (hydrocodone bitartrate extended-release capsules) for the management of pain severe enough to require daily, around-the-clock, long-term treatment and for which alternative treatment options are inadequate.

Zohydro ER, a Schedule II controlled substance under the Controlled Substances Act, is the first FDA-approved single-entity (not combined with an analgesic such as acetaminophen) and extended-release hydrocodone product.

Zohydro ER will offer prescribers an additional therapeutic option to treat pain, which is important because individual patients may respond differently to different opioids.

Zohydro ER is in the class of extended-release/long-acting (ER/LA) opioid analgesics. Due to the risks of addiction, abuse, and misuse with opioids, even at recommended doses, and because of the greater risks of overdose and death with ER/LA opioid formulations, Zohydro ER should be reserved for use in patients for whom alternative treatment options are ineffective, not tolerated, or would be otherwise inadequate to provide sufficient management of pain. Zohydro ER is not approved for as-needed pain relief.

The approved labeling for Zohydro ER conforms to updated labeling requirements for all ER/LA opioid analgesics announced by the FDA on Sept. 10, 2013.

The new class labeling and stronger warnings will more clearly describe the risks and safety concerns associated with ER/LA opioid analgesics, along with the appropriate use of these medications. These warnings are expected to improve the safety of all such medicines by encouraging more appropriate prescribing, patient monitoring, and patient counseling practices. Zohydro ER is the first opioid to be labeled in this manner.

Schedule II drugs can only be dispensed through a physician’s written prescription and no refills are allowed. There are also stringent recordkeeping, reporting, and physical security requirements for Schedule II controlled substances. 

The FDA is requiring postmarketing studies of Zohydro ER to assess the known serious risks of misuse, abuse, increased sensitivity to pain (hyperalgesia), addiction, overdose, and death associated with long term use beyond 12 weeks. These studies will also be required for other ER/LA opioid analgesics.

The safety of Zohydro ER is based on clinical studies of more than 1,100 people living with chronic pain. The efficacy of Zohydro ER is based on a clinical study that enrolled over 500 patients with chronic low back pain and showed significant improvement in chronic pain compared to placebo.

Zohydro ER will be part of the ER/LA Opioid Analgesics Risk Evaluation and Mitigation Strategy (REMS). Originally approved in 2012, the ER/LA Opioid Analgesics REMS requires companies to make available to health care professionals educational programs on how to safely prescribe ER/LA opioid analgesics and to provide Medication Guides and patient counseling documents containing information on the safe use, storage, and disposal of ER/ LA opioids.

The most common side effects of Zohydro ER are constipation, nausea, drowsiness (somnolence), fatigue, headache, dizziness, dry mouth, vomiting and itching (pruritus).

Zohydro ER is manufactured by San Diego-based Zogenix, Inc.

For more information:

FDA Approved Drugs: Questions and Answers
FDA: Opioid Medications
The FDA, an agency within the U.S. Department of Health and Human Services, protects the public health by assuring the safety, effectiveness, and security of human and veterinary drugs, vaccines and other biological products for human use, and medical devices. The agency also is responsible for the safety and security of our nation’s food supply, cosmetics, dietary supplements, products that give off electronic radiation, and for regulating tobacco products.

Dr Long John Hopkins

http://www.donlinlong.com/diagnosticcenter/tarlovcysts.html a Paragraph from the above Link from Dr Long
The history of Tarlov cysts is quite interesting.  Tarlov first thought they did not cause symptoms, but by the 1950’s he had identified patients with these cysts who could be cured by  surgery, and other surgeons began to report the same kinds of patients successfully treated by surgery.  Over the next 50 years or so, there have been a number of reports of individual patients and small groups of patients benefited significantly by surgical repair of symptomatic cysts.  For reasons which are unclear from the literature, the mythology has grown up over the past 20 years that these cysts never cause symptoms.  There is no paper which I can find published in the medical literature which supports this statement.  However, two generations of physicians have been taught that these cysts do not cause symptoms and radiologists often make the statement that the cysts do not cause symptoms in their reports without any knowledge of the individual patient.  How this all came about in the absence of any papers supporting the position is uncertain.  It is true that many cysts occur in patients without symptoms.  However, it is equally true that some cysts are symptomatic, injure nerves, and can cause serious neurological deficits with time.  The key issue is to determine when the cysts are symptomatic and when they are not.  It is the experience from many reports that some of these cysts are symptomatic and can be successfully treated.  These cysts occur most frequently in women,7-9 to 1.

Implantable Intrathecal Pumps for Chronic Pain: Highlights and Updates

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2080496/
a couple Paragraph from the article the Full article in above link xx sharon xxsoft hugs xx

The second category of patients is those with chronic non-malignant pain, for example, failed low back surgery syndrome. The use of intrathecal drug delivery systems in chronic non-malignant pain is more controversial. One has to recognize that chronic non-malignant pain is complicated by physical, psychological, and behavioral factors. To be successful, a treatment must include a multidimensional approach that takes into account each of the elements of the biopsychosocial model. Clearly, treatment for chronic pain should consider conservative approaches before more invasive treatments are considered. These approaches include but are not limited to physical therapy and rehabilitation, psychological and behavioral intervention such as self-relaxation cognitive and behavioral therapies (eg, biofeedback), pharmacotherapy, minimally invasive interventions (such as epidural and transforaminal injections), and alternative therapies such as acupuncture.

Intrathecal drug delivery systems are implanted for chronic pain when conservative therapies have failed, surgery is ruled out, no active or untreated addiction exists, psychological testing indicates appropriateness for implantable therapy, medical contraindications have been eliminated (coagulopathies, infections), and a successful intrathecal drug trial has been completed (22).

Go to:

Intrathecal pumps

Intrathecal pumps deliver small doses of medication directly to the spinal fluid. It consists of a small battery-powered, programmable pump (Figure 1) that is implanted under the subcutaneous tissue of the abdomen and connected to a small catheter tunneled to the site of spinal entry (Figure 2). Sophisticated drug dose regimens can be instituted. Implanted pumps need to be refilled every 1 to 3 months. There is no evidence showing whether it is more clinically effective to use bolus or continuous dosing. injury

Neurologic injury can result from the actual catheter placement, as well as from an inflammatory response that occurs at the catheter tip and is associated with drug delivery.

The implantation of spinal catheters for intrathecal drug delivery is done under fluoroscopy. The catheters are inserted through a spinal needle into the spinal canal. Damage to the nerve roots or the spinal cord itself during catheter insertion could occur, resulting in pain, sensory loss, and/or weakness. The deficits would present in the dermatomal distribution of the damaged nerve root. Damage to the spinal cord would lead to dysesthesias or myelopathies below the level of the damaged spinal cord. Also, intraparenchymal injury can occur (42,43), as well as cauda equina syndrome with pain, sensory loss, weakness, and bowel and bladder dysfunction. The deficits would present in multiple dermatomes in a saddle distribution. Neurologic injury can also develop later. One patient developed progressive necrotic myelopathy leading to paraplegia, a rare form of transverse myelitis (44). It is important for the surgeon to obtain pre-operative CT or MRI to check for canal stenosis, arachnoiditis, or other intraspinal abnormalities that would make insertion of the catheter more difficult.

Study Questions Use of Steroids in Spinal Shots

September 18th, 2013 by Pat Anson, Editor

Another study is raising questions about the value of epidural steroid injections. New research at the Johns Hopkins University School of Medicine suggests that it may not be the steroids in spinal shots that provide relief from lower back pain, but the introduction of any fluid – even just saline solution — in the space around the spinal cord.

In recent decades, epidural steroid injections (ESI) have become one of the most common treatments for back pain, with nearly 9 million spinal injections in the U.S. in 2011. Studies have shown the procedure often gives only short term pain relief and have high failure rates for conditions such as sciatica.

In addition, questions have also been raised about the safety of steroids, particularly after a fungal meningitis outbreak caused by contaminated steroids killed 64 people and sickened hundreds in 2012. Steroid injections have also been found to increase the risk of spinal fractures.

Johns Hopkins anesthesiologist Steven Cohen, MD, and his colleagues reviewed dozens of published studies on epidural steroid shots and found something unexpected. Epidural injections of any liquid — such as saline solution or a local anesthetic like Lidocaine — work just as well as steroids.

“Just injecting liquid into the epidural space appears to work,” says Cohen, a professor of anesthesiology and critical care medicine at the Johns Hopkins University School of Medicine. “This shows us that most of the relief may not be from the steroid, which everyone worries about.”

The Johns Hopkins review covered medical records of over 3,600 patients from 43 studies comparing ESI’s to other sorts of epidural and intramuscular injections. The Johns Hopkins study is being published in the October issue of the journal Anesthesiology.

The researchers say they’re not recommending that patients stop receiving epidural steroids, but their analysis suggests that smaller steroid doses could be just as beneficial.

“Our evidence does support the notion that, for now, reducing the amount of steroids for patients at risk may be advisable,” said lead author Mark Bicket, MD, an anesthesiology and critical care medicine chief resident at The Johns Hopkins Hospital.

Cohen says the new analysis also raises questions about the value of many clinical studies on epidural steroid injections, because saline or anesthetic injections were commonly used as a placebo treatment during the studies.

“It’s likely that those studies were actually comparing two treatments, rather than placebo versus treatment,” Cohen said. “Researchers may be wasting millions of dollars and precious time on such studies.”

Patient advocates say the Johns Hopkins study ads to the growing body of evidence that epidural steroid injections can be risky.

“ESI’s are dangerous and overused, and a lot of new studies are coming out that state this,” said Walt Davis, who has suffered from back pain for 30 years and is a patient advocate for theArachnoiditis Society for Awareness and Prevention (ASAP).

“I am not saying that all ESI’s are bad. There is a very small patient population that actually benefit from their use, but that percentage is as low as 20 percent, and even those that might benefit still run the very real risk of complications like arachnoiditis,” Davis wrote in an email toNational Pain Report.

“And honestly, I have had well over 20 epidural injections, and the very first one caused my pain to get worse. None of them ever relieved any pain ever. I had blown disks and a fractured spine. The placebo effect is a very real factor here, if you tell a patient that it will help, then to some it does.”

Davis and Terri Anderson, another patient advocate for ASAP, believe any type of injection into the spinal area is risky and can cause complications. One of the most severe is arachnoiditis, an inflammation of the spinal membrane that they both suffer from.

“I had a ruptured lumbar disc and the dozens of ESI’s that I endured never ever helped me to avoid back surgery, in fact I believe they screwed up the surgical results, as the surgeon reported to me that the nerve rootlets ‘were a mess’ following dozens of steroid injections,” Anderson said.

Epidural Steroid Injections, The Truth... Finally!

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Rare Disease Dayin United States

The USA joined Rare Disease Day in 2009 with participation from NORD, the National Organization for Rare Disorders, making the campaign a truly international affair. Diverse events and campaigns have been organised since then, including a collection of photographs with the Rare Disease logo across the USA, “Handprints across America”, and educational programmes in schools. In 2013 President Barack Obama sent a letter proclaiming his support of the day.

NORD, the National Organization for Rare Disorders, is committed to the identification, treatment, and cure of rare diseases through programmes of education, advocacy, research and patient services.  They can be contacted directly to help you find a patient organisation locally which may have more information about a specific rare disease or disorder. Find their contact information on the bottom of this page. 

Below you will find more information about what is happening in 2014 for Rare Disease Day along with contact information of the organisations holding the event. You can also get involved! Let us know if you know of any events that are not listed here. Write to us at rarediseaseday@eurordis.org.

Rare Disease Dayin Canada

Patient organisations in Canada have engaged in Rare Disease Day since its first year in 2008, arranging gala dinners and exchanges between researchers and patients, as well as regional events across Canada.

The Canadian National Alliance, the Canadian Organization for Rare Disorders (CORD), serves as the voice for the estimated 1 in 12 Canadians affected by a rare disease. They can be contacted directly to help you find a patient organisation locally which may have more information about a specific rare disease or disorder. Find their contact information on the bottom of this page. 

Below you will find more information about what is happening in 2014 for Rare Disease Day along with contact information of the organisations holding the event. 
You can also get involved! Let us know if you know of any events that are not listed here. Write to us at rarediseaseday@eurordis.org.