Tag: TMC Health

Neglected Tropical Diseases: Guinea-worm disease Up Date

Four years ago I wrote an article about Guinea-worm disease, one of the top ten neglected tropical diseases. Thirty years ago the former President Jimmy Carter’s foundation embarked on a program to eliminate the agonizing and debilitating parasitic disease that has plagued Africa for centuries. They are now close to eliminating it and it is Pres. Carter’s wish to see it gone before he is.

When former President Jimmy Carter announced Thursday that his cancer had spread to his brain, he also revealed he had some unfinished business he wants to see through.

“I would like to see Guinea worm completely eradicated before I die,” the philanthropist said. “I’d like for the last Guinea worm to die before I do.”

Carter went on to explain that there are currently only 11 cases of dracunculiasis, or guinea worm disease, in the world. That’s a precipitous drop from 3.5 million cases across 21 countries in 1986, when he first set out to conquer the disease through his nonprofit organization the Carter Center. [..]

When Guinea worm has been eradicated, it will be only the second time in human history that a disease has been totally wiped out. The first, smallpox, was eradicated in 1977, according to the World Health Organization. Experts from the Centers for Disease Control and Prevention estimate that Guinea worm will meet the same fate – a final piece in Carter’s legacy.

Below is the article I wrote in 2011 about the Guinea-worm disease which is no longer neglected and may soon no longer exist. Thank you and bless you, Pres. Carter. May he live to see this disease gone and longer.

The Failed War on Drugs

Cross posted from The Stars Hollow Gazette

Rep. Steve Cohen (D-TN):

“It is ludicrous, absurd, crazy to have marijuana at same level as heroin. Ask the late Philip Seymour Hoffman if you could. Nobody dies from marijuana. People die from heroin.”

“Every second that we spend in this country trying to enforce marijuana laws is a second that we’re not enforcing heroin laws. And heroin and meth are the two drugs that are ravaging our country,”

“And every death, including Mr. Hoffman’s, is partly the responsibility of the federal government’s drug priorities for not putting total emphasis on the drugs that kill, that cause people to be addicted and have to steal to support their habit.”

“When we put marijuana on the same level as heroin and crack and LSD and meth and crack and cocaine, we are telling young people not to listen to adults about the ravages and problems, and they don’t listen because they know you’re wrong.”

“You can’t name one person who’s died from a overdose of marijuana can you?”

Rep. Steve Cohen (D-Tenn.) tore into deputy drug czar Michael Botticelli on Tuesday, highlighting federal drug policy’s failure to address the substances “ravaging our country” while still considering marijuana to be as dangerous as heroin.

Speaking during a hearing of the House Committee on Oversight and Government Reform focused on the Obama administration’s marijuana policy, Cohen urged drug policy officials to rethink marijuana’s classification as a Schedule 1 substance, which the Drug Enforcement Administration considers “the most dangerous class of drugs.” Other Schedule 1 substances include heroin, LSD and ecstasy, while methamphetamine and cocaine fall under the Schedule II definition.

It is time to refocus and admit that the war on drugs has been lost.

The United States of Addiction

Cross posted from The Stars Hollow Gazette

In the tragic wake of the death of Academy Award winning actor Philip Seymour Hoffman from an apparent drug overdose this weekend, has put the ugly fact that heroin addiction is the US is on the rise and crosses all social and economic boundaries. Drug overdoses now kill more people than auto accidents with 105 deaths everyday. In the last ten years, heron use has more than doubled and overdoses from prescribed opiate pain killer has gone through the roof.

MSNBC’s “All In” host Chris Hayes took a look at the rise of heroin use in the United States with his guest neuroscientist and associate professor of psychology at Columbia University, Dr. Carl Hart, who specializes in studying the effect of drugs on the populace.

Three Policies That Can Save Other Drug Users From Philip Seymour Hoffman’s Fate

by Nicole Flatow, Think Progress

As public discussion over the failed War on Drugs has escalated and politicians mull marijuana and sentencing reforms, one part of the vision is to redirect enforcement resources toward education, treatment, and other health-oriented programs that help those struggling with addiction. But for those entrenched in addiction, there are low-hanging fruit solutions passed into law in a minority of states that directly tackle the problem of stopping preventable overdose deaths.

Shielding ‘Good Samaritans’ From Prosecution

Last year, Vermont became at least the 13th state in addition to the District of Columbia to pass a law incentivizing witnesses to call 911, by explicitly providing legal protection to those witnesses who call the police for help. [..]

Anti-Overdose Drugs

In many states, pharmacists and other health care professionals face criminal and civil liability for distributing naloxone to third parties – even police officers – who can administer it in an emergency situation. The drug has been described as a “miracle drug,” because it knocks opiates off receptors that make a user stop breathing, without any other known side effects. [..]

Laws are now emerging in some states to provide immunity to those professionals and laypeople, while other programs are equipping police officers with both training and kits to administer when they report to the scene. In 2012, then-White House Drug Czar Gil Kerlikowske for the first time endorsed broader distribution of naloxone. [..]

Treating The Addiction

Hoffman’s state of New York happens to be one that already has a Good Samaritan law, and just last week state lawmakers introduced another measure to expand the availability of naloxone. But neither of these solutions work for those like Hoffman who may have overdosed alone, since individuals in the midst of an overdose can’t self-administer or call 911. For that population, Clear believes the greatest tool is increased prescription of addiction treatment drugs like buprenorphine that mimic some qualities of opioids with more limited harms. Some approved U.S. doctors are permitted to prescribe these drugs to treat opioid addiction (users can take them for a less harmful high), but (Allan) Clear told ThinkProgress even those who have been through treatment should be prescribed the drug more often, recognizing the prevalence of relapse. In France, where all doctors have since 1995 been authorized to prescribe the addiction treatment, opiate overdose deaths decreased 79 percent between 1995 and 2004, according to one study.

Hoffman and the Terrible Heroin Deaths in the Shadows

by Jeff Deeney, The Atlantic

Addiction and mortality related to heroin and other narcotics in the U.S. has been steadily on the rise for years. Should it be easier for addicts to inject as safely as possible?

Now that Hoffman is gone the one purpose his passing can offer is to bring into sharp focus the fact that overdose deaths have long been on the rise in the U.S. (according to the Centers for Disease Control and Prevention, deaths from drug overdoses increased by 102 percent between 1999 and 2010), and to more vigorously continue the discussion about what to do about it. [..]

More people are using heroin, according to a 2012 Substance Abuse and Mental Health Services Administration survey. The survey found that between 2007 and 2012, the number of heroin users ages 12 and up increased from 373,000 to 669,000. [..]

U.S. drug policies are shifting. Slowly, and not enough, but there is progress. Mandatory minimums are being phased out. Treatment is increasingly available to those caught up in the criminal justice system. As the Affordable Care Act begins to take effect, treatment will become more broadly funded, especially for the poor. There is concern among public health professionals, myself included, that the policy shift will fall short of what we need to change conditions for injecting drug users.

Legal pot isn’t enough. For there to be an American version of Insite, Vancouver’s celebrated, medically-supervised, legal injecting space, the U.S. would need to decriminalize entirely. If Philip Seymour Hoffman had taken his last bags to a legal injecting space, would he still be alive? Had he overdosed there, medical staff on call might have reversed it with Naloxone. Had he acquired an abscess or other skin infection, he could have sought nonjudgmental medical intervention. Perhaps injection site staff could have directed him back to treatment.

Safe injecting sites are an amazing, life saving, humanity restoring intervention we can’t have because our laws preclude them. Too frequently, heroin addicts instead utilize abandoned buildings and vacant lots to shoot up in order to evade arrest. The risk for assault, particularly sexual assault for women, in off-the-grid, hidden get-high places is incredible. Overdosed bodies are routinely pulled from such spaces in North Philadelphia. [..]

Those of us in recovery need to remain vigilant in maintaining our mental health. There is much work to be done on America’s addiction problem. It involves ensuring effective treatment, expanding the science of the field, and making sure that those who are actively using can do so in a way that is safe and dignified. There is a way to make meaning from the otherwise senseless early death of Philip Seymour Hoffman, and that is to let it refocus our efforts on making sure the smallest number of people possible find the same fate.

Phil Hoffman’s death was a shock to his, family, his friends and his many fans. May this terrible loss bring attention to much needed reform of drug policies and laws, as well as, a change in attitude in how we approach drug addiction in the US. If in death Phillip saves one life, he will not have died in vain.

The Drugging of America

Cross posted from The Stars Hollow Gazette

The United States and New Zealand are currently the only countries in the world where the pharmaceutical industry is allowed to market and advertise prescription drugs. Direct to consumer advertising is one of two industry practices that have some under fire recently. The other is paying doctors to promote drugs.

One of the biggest market for drugs have been parents concerned about their children’s success in school. Attention Deficit Hyperactivity Disorder (ADHD) is now “the second most frequent long-term diagnosis made in children, narrowly trailing asthma, according to a New York Times analysis of C.D.C. data.”

The Selling of Attention Deficit Disorder

By Alan Schwarz, New York Times

The Number of Diagnoses Soared Amid a 20-Year Drug Marketing Campaign

After more than 50 years leading the fight to legitimize attention deficit hyperactivity disorder, Keith Conners could be celebrating.

Severely hyperactive and impulsive children, once shunned as bad seeds, are now recognized as having a real neurological problem. Doctors and parents have largely accepted drugs like Adderall and Concerta to temper the traits of classic A.D.H.D., helping youngsters succeed in school and beyond.

But Dr. Conners did not feel triumphant this fall as he addressed a group of fellow A.D.H.D. specialists in Washington. He noted that recent data from the Centers for Disease Control and Prevention show that the diagnosis had been made in 15 percent of high school-age children, and that the number of children on medication for the disorder had soared to 3.5 million from 600,000 in 1990. He questioned the rising rates of diagnosis and called them “a national disaster of dangerous proportions.”

“The numbers make it look like an epidemic. Well, it’s not. It’s preposterous,” Dr. Conners, a psychologist and professor emeritus at Duke University, said in a subsequent interview. “This is a concoction to justify the giving out of medication at unprecedented and unjustifiable levels.

The rise of A.D.H.D. diagnoses and prescriptions for stimulants over the years coincided with a remarkably successful two-decade campaign by pharmaceutical companies to publicize the syndrome and promote the pills to doctors, educators and parents. With the children’s market booming, the industry is now employing similar marketing techniques as it focuses on adult A.D.H.D., which could become even more profitable. [..]

Like most psychiatric conditions, A.D.H.D. has no definitive test, and most experts in the field agree that its symptoms are open to interpretation by patients, parents and doctors. The American Psychiatric Association, which receives significant financing from drug companies, has gradually loosened the official criteria for the disorder to include common childhood behavior like “makes careless mistakes” or “often has difficulty waiting his or her turn.”

The idea that a pill might ease troubles and tension has proved seductive to worried parents, rushed doctors and others.

The Selling of ADHD: Diagnoses, Prescriptions Soar After 20-Year Marketing Effort by Big Pharma

Taken at face value, the latest figures on attention deficit hyperactivity disorder (ADHD) suggest a growing epidemic in the United States. According to the Centers for Disease Control, 15 percent of high school children are diagnosed with ADHD. The number of those on stimulant medication is at 3.5 million, up from 600,000 two decades ago. ADHD is now the second most common long-term diagnosis in children, narrowly trailing asthma.

But a new report in The New York Times questions whether these staggering figures reflect a medical reality or an over-medicated craze that has earned billions in profits for the pharmaceutical companies involved. Sales for ADHD drugs like Adderall and Concerta topped $9 billion in the United States last year, a more than 500 percent jump from a decade before. The radical spike in diagnoses has coincided with a 20-year marketing effort to promote stimulant prescriptions for children struggling in school, as well as for adults seeking to take control of their lives. The marketing effort has relied on studies and testimonials from a select group of doctors who have received massive speaking fees and funding grants from major pharmaceutical companies.

We are joined by four guests: Alan Schwarz, an award-winning reporter who wrote the New York Times piece, “The Selling of Attention Deficit Disorder”; Jamison Monroe, a former teenage Adderall addict who now runs Newport Academy, a treatment center for teens suffering from substance abuse and mental health issues; Dr. Gabor Maté, a physician and best-selling author of four books, including “Scattered: How Attention Deficit Disorder Originates and What You Can Do About It”; and John Edwards, the father of a college student who committed suicide after he was prescribed Adderall and antidepressant medications at the Harvard University Health Services clinic.

One drug company, GlaxoSmithKline, a British owned company, has decided to stop paying doctors to promote their prescription drugs:

Andrew Witty, Glaxo’s chief executive, said in a telephone interview Monday that its proposed changes were unrelated to the investigation in China, and were part of a yearslong effort “to try and make sure we stay in step with how the world is changing,” he said. “We keep asking ourselves, are there different ways, more effective ways of operating than perhaps the ways we as an industry have been operating over the last 30, 40 years?”

For decades, pharmaceutical companies have paid doctors to speak on their behalf at conferences and other meetings of medical professionals, on the assumption that the doctors are most likely to value the advice of trusted peers.

But the practice has also been criticized by those who question whether it unduly influences the information doctors give each other and can lead them to prescribe drugs inappropriately to patients. All such payments by pharmaceutical companies are to be made public next year under requirements of the Obama administration’s health care law.

Under the plan, which Glaxo said would be completed worldwide by 2016, the company will no longer pay health care professionals to speak on its behalf about its products or the diseases they treat “to audiences who can prescribe or influence prescribing,” it said in a statement. It will also stop providing financial support directly to doctors to attend medical conferences, a practice that is prohibited in the United States through an industry-imposed ethics code but that still occurs in other countries. In China, the authorities have said Glaxo compensated doctors for travel to conferences and lectures that never took place.

Mr. Witty declined to comment on the investigation because he said it was still underway.

US Demands India Block Production Of Low-Cost Generic Drugs

Cross posted from The Stars Hollow Gazette

One of the biggest drivers of health care costs to the patient is medication. Pharmaceutical companies who hold the patents often make minor changes in the drug to gain a new patent and applying for a new patent on essentially the same drug. This is called “evergreening.” A paper in PLOS examined the economic impact of this practice:

The researchers identified prescriptions of eight follow-on drugs issued by hospital and community pharmacists in Geneva between 2000 and 2008. To analyze the impact of evergreening strategies on healthcare spending, they calculated the market share score (an indicator of market competitiveness) for all prescriptions of the originally patented (brand) drug, the follow-on drug, and generic versions of the drug. The researchers then used hospital and community databases to analyze the costs of replacing brand and/or follow-on drugs with a corresponding generic drug (when available) under three scenarios (1) replacing all brand drug prescriptions, (2) replacing all follow-on drug prescriptions, and (3) replacing both follow-on and brand prescriptions. [..]

Using these methods, the researchers found that over the study period, the number of patients receiving either a brand or follow-on drug increased from 56,686 patients in 2001 to 131,193 patients in 2008. The total cost for all studied drugs was €171.5 million, of which €103.2 million was for brand drugs, €41.1 million was for follow-on drugs, and €27.2 million was for generic drugs. Based on scenario 1 (all brand drugs being replaced by generics) and scenario 2 (all follow-on drugs being replaced by generics), over the study period, the healthcare system could have saved €15.9 million and €14.4 million in extra costs, respectively. The researchers also found some evidence that hospital prescribing patterns (through a restrictive drug formulary [RDF]) influenced prescribing in the community: over the study period, the influence of hospital prescription patterns on the community resulted in an extra cost of €503,600 (mainly attributable to two drugs, esomeprazole and escitalopram). However, this influence also resulted in some savings because of a generic drug listed in the hospital formulary: use of the generic version of the drug cetirizine resulted in savings of €7,700.

(emphasis mine).

In a post at his blog, law professor Jonathan Turley explains how President Barack Obama has yielded to the pressures of the pharmaceutical industry and pushed to block access the inexpensive generic drugs, demanding India, one of the world’s largest suppliers of generic drugs, block production of the low cost medications:

Millions of Americans struggle on a daily basis to afford medicine in the United States which is the highest in the world. Many seek affordable drugs by driving to Canada or seeking medicine (as well as medical care) in India. Yet, one of the first things that President Obama did in the new health care law was to cave to a demand by the powerful pharmaceutical lobby to drop provisions guaranteeing cheaper medicine. The lobby then got Congress to block two measures to guarantee affordable medicine. With billions at stake, Congress and the White House again yielded to the demands of this industry, which is sapping the life savings away of millions of families. Given this history, many are concerned about a meeting planned between Obama and the Prime Minister of India. Public interest groups object that Obama is threatening retaliation against India in the hopes of blocking one of the major alternatives for families in acquiring affordable medicine. Congress has also again responded to industry demands for pressure in India to change its laws and, as a result, raise the cost of medicine. Doctors Without Borders, a highly respected medical group, has denounced the effort of the Obama Administration as threatening basic health care for its own citizens and those around the world.

From Doctors Without Boarders press release:

On the eve of a meeting between US president Barack Obama and Indian prime minister Manmohan Singh at the White House, the international medical humanitarian organization Doctors Without Borders/Médecins Sans Frontières (MSF) today warned that India faces retaliatory political pressure from the US government and pharmaceutical industry for its efforts to legally limit abusive patenting practices and to increase access to affordable generic medicines.

Pharmaceutical companies are aggressively lobbying congress and the Obama administration in a broad campaign to press India into changing its intellectual property laws. India is a critical producer of affordable medicines, and competition among generic drug manufacturers there has brought down the price of medicines for HIV, TB, and cancer by more than 90 percent. [..]

The pharmaceutical lobby, led by Pfizer, is currently engaged in a concerted effort to pressure India to change its intellectual property laws. In June, 170 members of US congress wrote a letter to President Obama urging him to send a “strong signal” to India’s high-level officials about its intellectual property policies, and numerous congressional hearings have been held in the past year designed in part to criticize India’s robust defense of public health. Several interest groups have been created to lobby the US government about India’s policies and in early September, US congressional trade leaders requested that the US International Trade Commission initiate an official investigation on India’s intellectual property laws. [..]

Earlier this year, Novartis lost a seven-year-battle to claim a patent on the salt form of the cancer drug imatinib, marketed as Gleevec. The Indian Supreme Court ruled that this new formulation did not meet the patentability requirement in Indian patent law, which limits the common pharmaceutical industry practice of “evergreening,” or extending drug patents on existing drugs in order to lengthen monopolies. [..]

These decisions by the Indian judiciary and government are compliant with all existing international law, including those rules outlined in the World Trade Organization Agreement on Trade Related Aspects of Intellectual Property (TRIPS) and the Doha Declaration on TRIPS and Public Health. Both defend access to existing medicines by allowing countries to use legal flexibilities such as patent oppositions and compulsory licenses to overcome intellectual property barriers. Nevertheless, some US pharmaceutical companies are crying foul, and wrongly accusing India’s patent system of not being consistent with TRIPS.

(all emphasis mine)

As Prof. Turley points out, India is forcing down the cost of drugs making life saving drugs available to millions. If Big Pharma is successful the impact will be life threatening to millions around the world.

How Safe Is the US Water Supply

Cross posted from The Stars Hollow Gazette

These were the headlines in few major news outlets around the US this past week:

Deadly brain amoeba infects US tap water for the first time

by Maggie Fox NBC News

A deadly brain amoeba that’s killed two boys this year has been found in a U.S. drinking water supply system for the first time, officials said Monday — in a New Orleans-area system.

The Naegleria fowleri parasite killed a 4-year-old Mississippi boy who likely got it playing on a back yard Slip ‘N Slide, Centers for Disease Control and Prevention officials say. Tests show it’s present throughout the water supply system in St. Bernard Parish, directly southeast of New Orleans.

St. Bernard water system tests positive for rare brain-eating amoeba, CDC confirms

by  Benjamin Alexander-Bloch, NOLA.com | The Times-Picayune

The St. Bernard Parish water system has tested positive for a rare brain-eating amoeba, the federal Centers for Disease Control and Prevention confirmed, about a week after St. Bernard Parish government officials assured the public that the parish was taking every precaution possible to flush out its water system.

The CDC has confirmed the presence of the Naegleria fowleri amoeba in four locations of parish’s water system in Violet and Arabi, the Louisiana Department of Health and Hospitals said Thursday (Sept. 12).

Brain-Eating Amoeba Confirmed In St. Bernard Parish Water Supply, CDC Says

by Zoe Mintz, International Business Times

The St. Bernard Parish water system in Louisiana has tested positive for the rare brain-eating amoeba that killed a 4-year-old boy last month, the U.S. Centers for Disease Control confirmed Thursday. [..]

Officials believe the parish water system became compromised after its chlorine levels were low, according to state Assistant Health Secretary J.T. Lane. The parish will be flushing its water lines with chlorine for several weeks until they reach recommended levels, CNN reports.

Naegleris fowleri is a parasite found mostly in warm fresh water of ponds, lakes, rivers, and hot springs.  It is also found in soil, near warm-water discharges of industrial plants, and unchlorinated or poorly chlorinated swimming pools in an amoeboid or temporary flagellate stage.

It can invade and attack the human nervous system and brain though the nasal passages. This is the only known pathway for the parasite, since it is neutralized in the mouth and gut by enzymes.

In humans, N. fowleri can invade the central nervous system via the nose (specifically through the olfactory mucosa and cribriform plate of the nasal tissues). The penetration initially results in significant necrosis of and hemorrhaging in the olfactory bulbs. From there, the amoeba climbs along nerve fibers through the floor of the cranium via the cribriform plate and into the brain. The organism begins to consume cells of the brain piecemeal by means of a unique sucking apparatus extended from its cell surface. It then becomes pathogenic, causing primary amoebic meningoencephalitis (PAM or PAME). PAM is a syndrome affecting the central nervous system. PAM usually occurs in healthy children or young adults with no prior history of immune compromise who have recently been exposed to bodies of fresh water.

Even with early intervention using large doses of intravenous antifungals, the survival rate is 1% – 3%. the CDC recommends using nose plugs when swimming.

So, Don’t sniff the water? What about cold air vaporizers and humidifier? Granted Louisiana doesn’t have a low humidity issue, but what do you think they use in some air conditioning systems? Bourbon?

The question is what happened in St. Bernard Parish? From Yves Smith at naked capitalism:

For six years, we’ve discussed off and on how income inequality hurt the health of citizens, even in the top income strata. The US now ranks 27th in life expectancy among 34 advanced economies, down from 20 in 1990.

But in addition to the considerable health dangers of stress and weak social bonds, more obvious public health risks may be coming to the fore. Strained municipal budgets means reduced public services, and they can have direct health impact, such as frequency of garbage pickup, the level of staffing of emergency services, the number of hospital beds per capita (consider what happens if you have a natural disaster or disease outbreak and the number of sick and injured exceed the capacity of local facilities). [..]

Now on the surface, this may not sound like a big deal. Poor New Orleans parish screws up, putting kids at risk, but it can fix the problem cheaply and quickly. But the problem is the pathogen should never have been in the water in the first place. Chlorine is inexpensive, so that suggests the contamination resulted from human failings. One has to wonder if those are budget related, due to reduced staffing or changes in supervision procedures. [..]

The problem, of course, is that it will likely take some sort of calamity for the rich to realize that they can’t fully insulate themselves from the rest of society. And the sort of incident that will wake them up to that risk will almost certainly exact a bigger toll on everyone else, unless it’s of the guillotine and pitchforks variety.

Sanjay’s Change of Mind on Medical Marijuana

Cross posted from The Stars Hollow Gazette

In an amazing reversal, CNN’s Chief Medical Correspondent Dr. Sanjay Gupta changed his position on marijuana’s health benefits and apologized.

Over the last year, I have been working on a new documentary called “Weed.” The title “Weed” may sound cavalier, but the content is not.

I traveled around the world to interview medical leaders, experts, growers and patients. I spoke candidly to them, asking tough questions. What I found was stunning.

Long before I began this project, I had steadily reviewed the scientific literature on medical marijuana from the United States and thought it was fairly unimpressive. Reading these papers five years ago, it was hard to make a case for medicinal marijuana. I even wrote about this in a TIME magazine article, back in 2009, titled “Why I would Vote No on Pot.”

Well, I am here to apologize.

I apologize because I didn’t look hard enough, until now. I didn’t look far enough. I didn’t review papers from smaller labs in other countries doing some remarkable research, and I was too dismissive of the loud chorus of legitimate patients whose symptoms improved on cannabis.

Meet the little girl who changed his mind. Charlotte Figi is a 6 year old who suffers from Dravet Syndrome:

Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and catastrophic form of intractable epilepsy that begins in infancy. Initial seizures are most often prolonged events and in the second year of life other seizure types begin to emerge. Development remains on track initially, with plateaus and a progressive decline typically beginning in the second year of life. Individuals with Dravet syndrome face a higher incidence of SUDEP (sudden unexplained death in epilepsy) and have associated conditions, which also need to be properly treated and managed. [..]

Children with Dravet syndrome do not outgrow this condition and it affects every aspect of their daily lives.

Unless a cure or better treatments for Dravet syndrome and related epilepsies are found, individuals with these disorders face a diminished quality of life. Current treatment options are extremely limited and the prognosis for these children is poor. The constant care and supervision of an individual with such highly specialized needs is emotionally and financially draining on the family members who care for these individuals.

Long Search For 6-Year-Old’s Seizure Relief Ends With Medical Marijuana

Nicole Flatlow, Think Progress

Before she started using medical marijuana, Charlotte Figi was suffering from seizures lasting 2 to 4 hours that landed her in the hospital and several times stopped her heart. She lost the ability to walk, talk, and eat, and her parents said their goodbyes on several occasions. Doctors had her on seven different potent, addictive medications; they had her on a special diet. But each time, the benefits were only temporary, and the side effects were overwhelming.

Charlotte’s mother, Paige Figi, had voted against the Colorado medical marijuana ballot initiative that passed in 2000. But after doing some research, she and her husband Matt changed their minds. They found a video of a young boy in California who suffered dramatic seizures and whose life had been changed by a strain of medical marijuana. [..]

To find a steady supply of the substance, they turned to brothers known as the “Robin Hoods of marijuana” who ask patients to donate only what they can. Forty-one other patients with seizures and cancer are now using the strain that’s been named Charlotte’s Web for its first user.

Now Charlotte is feeding herself, walking, and riding her bike. She usually only has one seizure a day, and usually in her sleep. [..]

But the Figis are lucky enough to live in one of the 20 states where medical marijuana is legal, which largely insulates them even from federal criminal prosecution. Suppliers of medical marijuana in these states, however, are not immune from criminal crackdowns, even when they are seeming models for compliance with state law. A recent survey found that the overwhelming majority of U.S. doctors – 76 percent – would prescribe medical marijuana to their patients.

In all my 30 plus years in Emergency Medicine, I have never treated a patient for a marijuana overdose. Yet, I have treated patients whose only relief from pain of glaucoma, or the side effects of drug therapy for AIDS or cancer chemotherapy was marijuana.

Please support the legalization and fight for marijuana reform nation wide.

Just Say Now

 photo Marijuana.jpg

No More Pink Ribbons

Cross posted from The Stars Hollow Gazette

Since of the Susan G. Komen for the Cure charity’s decision to eliminate funding to Planned Parenthood for breast cancer screenings, the Komen foundation has come under not just criticism for abandoning many women’s only option for breast cancer screening but it has brought to light some very ugly truths about the organization. The most critical one is that its pink ribbon campaign has done more harm than good. As David Dayen and TBogg at FDL both note, Komen’s official line that “our priority is and always will be the women we serve” is a joke considering the number of women who use Planned Parenthood for their health care and that Komen does virtually nothing for women’s health or fighting breast cancer

A documentary that premiered last fall at the Toronto Film Festival, Pink Ribbons, Inc, that is about to be released in Canadian theaters, exposes the Pink Ribbon campaign for what it is, a money raising farce for corporations that have done nothing to find a cure for breast cancer but in some cases may have contributed to its rise:

Indignant and subversive, “Pink Ribbons, Inc.” resoundingly pops the shiny pink balloon of the breast cancer movement/industry, debunking the “comfortable lies” and corporate double-talk that permeate the massive and thus-far-ineffectual campaign against a disease that claims nearly 60,000 lives each year in North America alone. Veteran helmer Lea Pool, working from Samantha King’s book, won’t be making any friends with her full-frontal attack on the corporate co-option of the breast cancer cause, which could limit Stateside circulation of this Canadian production. But there are plenty of women who’ll want to see it. And they’ll be seeing red, not pink.

The thrust of King’s thesis is that all the pink-themed walk-a-thons, parades, singing children and rose-lit monuments (the Empire State Building, Niagara Falls), actually do more harm than good. By putting a warm and fuzzy spin on the state of breast cancer, the public is distracted from some very ugly numbers: In 1940, a woman had a one-in-22 chance of developing breast cancer; today, the number is one in eight. Only 20%-30% of women with breast cancer have high-risk factors, which means no one really knows what causes the disease. The leading foundations involved in funding cancer research are peopled by representatives of the pharmaceutical, chemical and energy industries, so their ethics are inherently compromised.

This article from Salon’s Mary Elizabeth Williams details where all the Komen money goes. They raise a huge amount of money but only 24% goes to research and yet spends:

a million dollars a year in donor funds” aggressively going after other organizations that dare to use the phrase “for the cure” – including small charities like Kites for a Cure, Par for the Cure, Surfing for a Cure, Cupcakes for a Cure, and even a dog-sledding event called Mush for the Cure.

The Komen foundation is nothing more than a front for corporations. Running for cures, buying pink ribbons and balloons will not find a cure and hasn’t done a damn thing but rake in profits for corporations. Those pink ribbons should make every woman and man (they get breast cancer, too) see red.

Big Profits For Big Pharma

Cross posted from The Stars hollow Gazette

From 2000 to 2009, Pharmaceutical companies reaped $690 billion in mergers and only invested 10% of that on research to find cures for 90% of the world’s diseases. The Unites States rank #1 in the amount that is spent on health care but only #37 when it comes to the quality of that care.

Author and medical ethicist, Harriet A. Washington’s recent book “Deadly Monopolies”, delves into the corporate takeover of the medical industry that is affecting the healthcare system and the future of medicine. The book also examines the role of medical patents in slowing U.S. research and inflate drug costs. Ms. Washington joined Dylan Ratigan and his panel to discuss “Big Pharma” and big profits.

Deadly Monopolies

You can read an adapted exert from “Deadly Monopolies” here

One of the diseases and its cure that it touched upon in this discussion is Human African trypanosomiasis HAT, or sleeping sickness. Second stage sleeping sickness is treated with eflornithine, which is given in 4 intravenous infusions daily for 14 days.

A little side story of Eflornithine and the fight that WHO and an NGO waged to get it produced. The drug was originally developed as a cancer treatment by Merrell Dow Research Institute in the late ’70’s. It wasn’t very effective as a cancer treatment but was found to reduce hair growth and, inadvertently, very a effective treatment for HAT. Eventually, it was developed and marketed as a prescription cream, Vaniqa, to treat women with excessive facial hair by the Gillette company.

The drug was registered for the treatment of gambiense HAT in 1990. However, in 1995 Aventis (now Sanofi-Aventis) stopped producing the drug, whose main market was African countries, because it didn’t make a profit. Production for the drug requires a separate facility because the process is very corrosive.

In 2001, Aventis (now Sanofi-Aventis) and the WHO formed a five-year partnership, during which more than 320,000 vials of pentamidine, over 420,000 vials of melarsoprol, and over 200,000 bottles of eflornithine were produced by Sanofi-Aventis, to be given to the WHO and distributed by the association Médecins Sans Frontières in countries where the sleeping sickness is endemic.

According to Médecins Sans Frontières, this only happened after “years of international pressure”, and coinciding with the period when media attention was generated because of the launch of the eflornithine-based product, Vaniqa, geared to prevention of facial-hair in women), while its life-saving formulation was not being produced.

From 2001, when production was restarted, through 2006, 14 million diagnoses were made. This greatly contributed to stemming the spread of sleeping sickness, and to saving nearly 110,000 lives. This changed the epidemiological profile of the disease, meaning that eliminating it altogether can now be envisaged.  

Neglected Tropical Diseases: Human African Trypanosomiasis

Cross posted from The Stars Hollow Gazette

This is a series of diaries focused on the World Health Organization Neglected Tropical Diseases Program. I initially wrote a diary about Dengue Fever that had hospitalized Salon columnist and constitutional lawyer, Glenn Greenwald. The second diary briefly introduced the other diseases on the WHO list.

This diary will focus in Human African trypanosomiasis HAT, or sleeping sickness, parasitic disease transmitted by the bite of the ‘Glossina’ insect, commonly known as the tsetse fly infected with a protozoa of the species Trypanosoma brucei. The flagellate protozoan Trypanosoma brucei exists in 2 morphologically identical subspecies: Trypanosoma brucei rhodesiense (East African or Rhodesian African trypanosomiasis) and Trypanosoma brucei gambiense (West African or Gambian African trypanosomiasis).

Tsetse flies are found in 36 countries in sub-Saharan Africa, putting 60 million people at risk. The disease affects mostly poor populations living in remote rural areas of Africa. Untreated, it is usually fatal. Travelers also risk becoming infected if they venture through regions where the insect is common. Generally, the disease is not found in urban areas.

Sleeping Sickness is the deadliest disease in the world. Without treatment, the parasites kill.

Neglected Tropical Diseases: Guinea-worm disease

Cross posted from Stars Hollow Gazette

This is a series of diaries focused on the World Health Organization Neglected Tropical Diseases Program. I initially wrote a diary about Dengue Fever that had hospitalized Salon columnist and constitutional lawyer, Glenn Greenwald. The second diary briefly introduced the other diseases on the WHO list.

This week will focus on Guinea-worm disease (GWD), or Dracunculiasis, which is a debilitating and painful parasitic infection caused by a large nematode (roundworm), Dracunculus medinensis. The guinea worm is one of the best historically documented human parasites, with tales of its behaviour reaching as far back as the 2nd century BC in accounts penned by Greek chroniclers. It is also mentioned in the Egyptian scrolls, dating from 1550 BC. An Old Testament description of “fiery serpents” may have been referring to Guinea Worm: “And the Lord sent fiery serpents among the people, and they bit the people; and much people of Israel died.” (Numbers 21:4-9). The name dracunculiasis is derived from the Latin “affliction with little dragons” while the common name “guinea worm” appeared after Europeans saw the disease on the Guinea coast of West Africa in the 17th century.

It a water born disease and is contracted by drinking stagnant water that has been contaminated with the worm and copepods infested by the larvae. Copepods are tiny crustaceans found in sea and nearly every freshwater habitat. The disease manifests itself about a year after infection, usually as a large blister on the leg, that burns and itches and the mature worm, 1m long, tries to emerge. The infected person tries to relieve the pain by immersing the infected part in water, usually open water sources such as ponds and shallow wells. This stimulates the worm to emerge and release thousands of larvae into the water, thus perpetuating the cycle.

For persons living in remote areas with no access to medical care, healing of the ulcers can take several weeks. People in endemic villages are incapacitated during peak agricultural activities. This can seriously affect their agricultural production and the availability of food in the household, and consequently the nutritional status of their family members, particularly young children. Outbreaks can cause serious disruption to local food supplies and school attendance.

The good news is that the end of GWD is currently in sight. Thanks to President Jimmy Carter and the his Center’s initiative to eradicate this disease there are currently only four countries in the world where GWD is endemic, Sudan, Ghana, Mali and Ethiopia. The major focus is on Sudan where 84% of the 3,190 infections reported in 2009 occurred. WHO predicted it will be “a few years yet” before eradication is achieved, on the basis that it took 6-12 years for the countries that have so far eliminated Guinea worm transmission. Endemic countries must report to the International Commission for the Certification of Dracunculiasis Eradication and document the absence of indigenous cases of GWD for at least three consecutive years to be certified as Guinea worm-free. Guinea worm disease will be only the second human disease, after smallpox, to be eradicated globally.

Prevention

Guinea worm disease can only be transmitted by drinking contaminated water, and can be completely prevented through relatively simple measures that could result in the disease being eradicated:

   * Drinking solely water drawn from underground sources free from contamination, such as a borehole or hand-dug wells.

   * Filtering drinking water, using a fine-mesh cloth filter like nylon, to remove the guinea worm-containing crustaceans.

   * Preventing people with emerging guinea worms from entering ponds and wells used for drinking water.

   * Developing new sources of drinking water that lack the parasites, or repairing dysfunctional ones.

Water sources can also be treated with larvicides to kill worm-carrying crustaceans.

Further discussion is below the fold, since the brief description of treatment and video are graphic and not for the squeamish.

Neglected Tropical Diseases

Recently I wrote a diary about Dengue Fever, a tropical disease that is caused by a mosquito transmitted virus, I mentioned that it was classed as a “neglected disease” by the World Health Organization. I’d like to talk about some of the other neglected diseases, what causes them, how they are spread and, most importantly, who they affect and how they impact on the rest of the world. In up coming diaries, I will focus on each one as I did with Dengue.

First, why are these diseases neglected? It is mostly because they are diseases of of poverty. Until these diseases impact on the wealthy in some way, treatment and prevention will remain a struggle for the countries and people where they are endemic. The lives of over one billion people are impacted in developing regions of Africa, Asia, and the Americas. Some of these diseases have known preventive measures or acute medical treatments which are available in the developed world but which are not universally available in poorer areas. In some cases, the treatments are relatively inexpensive. For example, the treatment for schistosomiasis is $0.20 per child per year. In the last few years, the Bill and Melinda Gates Foundation and The Carter Center have brought attention to the diseases caused by flavivirus, trypanosomiasis (sleeping sickness) and parasitic worms.

These are the diseases classified as neglected by WHO:

   * Buruli Ulcer

   * Chagas disease(American trypanosomiasis)

   * Cysticercosis

   * Dengue/dengue haemorrhagic fever

   * Dracunculiasis (guinea-worm disease)

   * Echinococcosis

   * Fascioliasis

   * Human African trypanosomiasis

   * Leishmaniasis

   * Leprosy

   * Lymphatic filariasis

   * Onchocerciasis

   * Rabies

   * Schistosomiasis

   * Soil transmitted helminthiasis

   * Trachoma

   * Yaws

I’m fairly certain most of you have never heard of most of them and might be a bit surprised by one that is on that list, Rabies, which is a virus spread by wild and domestic animal bites. It is endemic on every continent except Antarctica and is easily treatable and can be controlled and prevented. Yet, here it is on a list of neglected diseases.

I look forward to your comments and questions which I will try to answer as best I can.

The next diary will focus on Dracunculiasis (guinea-worm disease) and its eradication.

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