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MELANOMA CANCER vs. THE CALIFORNIA STEM CELL PROGRAM: Disease-a-week Challenge #10

In the classic movie GOLDFINGER, James Bond is tied on his back to a table, while a buzzing crackling laser beam is just about to saw him in half. Bond struggles helplessly, then calls out to the villain: “Do you expect me to talk?

And Auric Goldfinger answers, “No, Mr. Bond. I expect you to die.”

Naturally our hero talks his way out of the situation. Movie villains seem to need to brag and show off before the one man on Earth who can spoil their plans. Bond is released, the world is saved, and the franchise goes on.

But in that instant there was a distinct chill, as though Death had entered the room.

Once, cancer diagnosis was a threat from which there was no escape. But today, with early action and encouraging research, we do have a chance.

Quick quiz: do you know the ABCDE’s of skin cancer?

Asymmetry—one half of it is different than the other; Border irregularities—the edges are ragged; Color differences—varying shades of tan, brown or black; Diameter—bigger than a pencil eraser; Evolving—the mole noticeably changes”.

http://www.skincancer.org/skin-cancer-information/melanoma/melanoma-warning-signs-and-images/do-you-know-your-abcdes

What should you do, if you get a mole on your skin and it has any of the above?

Hint: take it to the doctor.*

The outcome could be happy.

The doctor might look at the mole on your cheek and say: “Take this off?” You say, “Yup,” and half an hour later, it’s gone, the cancer scooped cleanly from the flesh. The skin is numbed, you stay awake through the surgery, wear a bandage for a couple days, show off the scar to your friends. Handled appropriately, it is no big deal.

But if you wait too long?

A deadly skin cancer called melanoma can spread: traveling through the blood or lymph system, invading liver, lungs, intestines, brain, or eyes.

“World-wide, more than 160,000 new cases of the skin cancer melanoma are diagnosed each year. The vast majority are caught early enough that they can be cured by surgery. But when this tumor spreads… it becomes highly resistant to most current therapies…”

https://www.cirm.ca.gov/our-progress/melanoma-fact-sheet

At that point, even surgery, chemo, radiation and hormones may not help.

“It usually causes death within one to two years, and only 10-15% of patients survive five years.”

http://www.caladrius.com/press-release/first-patient-dosed-in-phase-3-immunotherapy-trial-for-melanoma/

We need a way to fight this silent killer.

Drs. Robert Dillman and Hans Keirstead are part of the senior leadership of a company called Caladrius (previously NeoStem). Their company’s odd name, Caladrius, comes from a mythological Roman bird. According to legend, the caladrius could fly into the house of a dying person, absorb his or her sickness, and fly away with it, leaving the sufferer well.

Keirstead is a stem cell specialist par excellence; Dillman is a cancer immunotherapy expert. Joining their skills, they may have built something that will change the world.

The California stem cell program recently awarded the pair a $17.7 million grant, to help support a Phase 3 clinical trial, the first time this has been done in the program’s history.

The patients involved face imminent death; they have stage 4 cancer.

The Phase 3 trials are for efficacy: the medicine given might cure the patients.

There had already been two Phase 2 trials with the same medication—and it saved lives. Of 72 patients treated with this, 51% survived at least five years– compared with only 32% for 71 treated with another promising vaccine. In other words, for those taking the medication the odds of surviving were greater than 2-1. Without the medication, it was the other way around; you were twice as likely not to live.

–Interview, Keirstead and Dillman

How does this patient-centered therapy work? First, a piece of tissue containing cancer cells is surgically removed, and a tumor stem cell line is established. The cells are then treated with radiation so they can no longer divide, before being mixed with the patient’s own immune cells and a growth factor. This vaccine then works with the patient’s immune system to battle the cancer.

This “super soup” is injected under the skin once a week for three weeks, and then once a month for five months.

Could it work? Here is what the therapy meant to one patient: Norm Beegun.

“Prior to receiving the vaccine, the patient had experienced multiple metastases, distantly spread to the lung, the bowel, and the liver.”—personal communication, Robert Dillman.

He had tried therapy after therapy, but the cancer always came back.

But after the new methodology was administered?

“Unlike the other therapies he had tried, this one had no side effects, no discomfort, no pain or problems. All it did was get rid of the cancer. (emphasis added—DR) Regular scans since then have shown no sign that the melanoma has returned.”

http://blog.cirm.ca.gov/2015/06/03/one-mans-story-points-to-hope-against-a-deadly-skin-cancer/

If such amazing results continue, this stem cell therapy may be the way to defeat not only melanoma, but also tumors of the liver, ovary, and much more.

Cancer should be an inconvenience, not a death sentence.

For more information, visit:

http: //theintusstudy.com/ or visit the NIH clinical trial site: http://www.clinicaltrials.gov/ct2/show/NCT01875653.

*Take all cancer questions to the doctor, without delay. We want you safe.

Don C. Reed is the author of the forthcoming book, STEM CELL BATTLES: How Ordinary People Can Fight Back Against the Crushing Burden of Chronic Disease. Available for pre-order at Amazon.com.

http://www.worldscientific.com/worldscibooks/10.1142/9255.html.

MELANOMA CANCER vs. THE CALIFORNIA STEM CELL PROGRAM: Disease-a-week Challenge #10

In the classic movie GOLDFINGER, James Bond is tied on his back to a table, while a buzzing crackling laser beam is just about to saw him in half. Bond struggles helplessly, then calls out to the villain: “Do you expect me to talk?

And Auric Goldfinger answers, “No, Mr. Bond. I expect you to die.”

Naturally our hero talks his way out of the situation. Movie villains seem to need to brag and show off before the one man on Earth who can spoil their plans. Bond is released, the world is saved, and the franchise goes on.

But in that instant there was a distinct chill, as though Death had entered the room.

Once, cancer diagnosis was a threat from which there was no escape. But today, with early action and encouraging research, we do have a chance.

Quick quiz: do you know the ABCDE’s of skin cancer?

Asymmetry—one half of it is different than the other; Border irregularities—the edges are ragged; Color differences—varying shades of tan, brown or black; Diameter—bigger than a pencil eraser; Evolving—the mole noticeably changes”.

http://www.skincancer.org/skin-cancer-information/melanoma/melanoma-warning-signs-and-images/do-you-know-your-abcdes

What should you do, if you get a mole on your skin and it has any of the above?

Hint: take it to the doctor.*

The outcome could be happy.

The doctor might look at the mole on your cheek and say: “Take this off?” You say, “Yup,” and half an hour later, it’s gone, the cancer scooped cleanly from the flesh. The skin is numbed, you stay awake through the surgery, wear a bandage for a couple days, show off the scar to your friends. Handled appropriately, it is no big deal.

But if you wait too long?

A deadly skin cancer called melanoma can spread: traveling through the blood or lymph system, invading liver, lungs, intestines, brain, or eyes.

“World-wide, more than 160,000 new cases of the skin cancer melanoma are diagnosed each year. The vast majority are caught early enough that they can be cured by surgery. But when this tumor spreads… it becomes highly resistant to most current therapies…”

https://www.cirm.ca.gov/our-progress/melanoma-fact-sheet

At that point, even surgery, chemo, radiation and hormones may not help.

“It usually causes death within one to two years, and only 10-15% of patients survive five years.”

http://www.caladrius.com/press-release/first-patient-dosed-in-phase-3-immunotherapy-trial-for-melanoma/

We need a way to fight this silent killer.

Drs. Robert Dillman and Hans Keirstead are part of the senior leadership of a company called Caladrius (previously NeoStem). Their company’s odd name, Caladrius, comes from a mythological Roman bird. According to legend, the caladrius could fly into the house of a dying person, absorb his or her sickness, and fly away with it, leaving the sufferer well.

Keirstead is a stem cell specialist par excellence; Dillman is a cancer immunotherapy expert. Joining their skills, they may have built something that will change the world.

The California stem cell program recently awarded the pair a $17.7 million grant, to help support a Phase 3 clinical trial, the first time this has been done in the program’s history.

The patients involved face imminent death; they have stage 4 cancer.

The Phase 3 trials are for efficacy: the medicine given might cure the patients.

There had already been two Phase 2 trials with the same medication—and it saved lives. Of 72 patients treated with this, 51% survived at least five years– compared with only 32% for 71 treated with another promising vaccine. In other words, for those taking the medication the odds of surviving were greater than 2-1. Without the medication, it was the other way around; you were twice as likely not to live.

–Interview, Keirstead and Dillman

How does this patient-centered therapy work? First, a piece of tissue containing cancer cells is surgically removed, and a tumor stem cell line is established. The cells are then treated with radiation so they can no longer divide, before being mixed with the patient’s own immune cells and a growth factor. This vaccine then works with the patient’s immune system to battle the cancer.

This “super soup” is injected under the skin once a week for three weeks, and then once a month for five months.

Could it work? Here is what the therapy meant to one patient: Norm Beegun.

“Prior to receiving the vaccine, the patient had experienced multiple metastases, distantly spread to the lung, the bowel, and the liver.”—personal communication, Robert Dillman.

He had tried therapy after therapy, but the cancer always came back.

But after the new methodology was administered?

“Unlike the other therapies he had tried, this one had no side effects, no discomfort, no pain or problems. All it did was get rid of the cancer. (emphasis added—DR) Regular scans since then have shown no sign that the melanoma has returned.”

http://blog.cirm.ca.gov/2015/06/03/one-mans-story-points-to-hope-against-a-deadly-skin-cancer/

If such amazing results continue, this stem cell therapy may be the way to defeat not only melanoma, but also tumors of the liver, ovary, and much more.

Cancer should be an inconvenience, not a death sentence.

For more information, visit:

http: //theintusstudy.com/ or visit the NIH clinical trial site: http://www.clinicaltrials.gov/ct2/show/NCT01875653.

*Take all cancer questions to the doctor, without delay. We want you safe.

Don C. Reed is the author of the forthcoming book, STEM CELL BATTLES: How Ordinary People Can Fight Back Against the Crushing Burden of Chronic Disease. Available for pre-order at Amazon.com.

http://www.worldscientific.com/worldscibooks/10.1142/9255.html.

GWENDOLYN STRONG: In Memory, and Challenge

By Don C. Reed

My son Roman never cries. He is paralyzed, but he has the heart of a lion.

So when he called tonight, just moments ago, sobbing uncontrollably, I could not recognize the voice.

And then I understood.  He said:

“Gwendolyn died.”

Gwendolyn Strong was seven years old, the daughter of Bill and Victoria Strong. Her age was a testament to their dedication and love. Most children with Spinal Muscular Atrophy, (SMA), die at the age of two, or younger.

It is a form of paralysis, which grows worse and worse, and is, to the best of my knowledge, invariably fatal.

Roman had been thinking about Gwendolyn a lot, lately.  Her parents had written in their blog that she was tired, and her anxiety level was high. So was theirs.

But there was nothing more that could be done. They loved her, stayed with her, providing for her needs all day and all night.

When a child has SMA, his or her body forgets how to do even the smallest thing, like swallow. Gwendolyn had to be fed by a tube in her stomach.  She had never known the joy of chewing a good solid meal.

She could not run, or walk, or move anything under her own control. She could not  even breathe very long, without a machine. It was frightening when the oxygen tank which gave her life had to be turned off, to replace it with another.

But she communicated, said my son, with expressive sky-blue eyes.

Gwendolyn inspired. Her name was so perfect for her: Strong.

How can any of us complain, when we see what she lived with?

Her parents, Bill and Victoria, worked and worked to raise money for research through the Gwendolyn Strong Foundation.

The only way we can deal with such pain is to fight the evil thing that harmed her.

Champion scientists like Hans Keirstead have worked to develop new therapies, trying to defeat this vile killer of children. But help did not come in time.

Gwendolyn was the same age as my own grand-daughter, Katherine, whom I could not love any more, or my heart would burst.

We all have someone for whom we would willingly give our lives.

Bill and Victoria were such parents.

Honor their struggle.

I have no money to speak of; my credit card is nearly maxed.

But I will give $25. It is not much, but it is something. And that is all we ever have:  just the chance to do a little bit.

Do something for someone who struggles with incurable disease. Help us defeat it.

Do it in memory of Gwendolyn Strong.

http://thegsf.org/donate

http://www.huffingtonpost.com/don-c-reed/hearing-loss-vs-the-calif_b_7849342.html

Always a joy when the Huffington Post picks up one of the articles on stem cell research– they do such a classy job on presentation, nice pictures and everything– if you want to meet two of the champions fighting against deafness, click on:  http://www.huffingtonpost.com/don-c-reed/hearing-loss-vs-the-calif_b_7849342.html

HEARING LOSS vs. THE CALIFORNIA STEM CELL PROGRAM: Disease-a-Week Challenge #9
By Don C. Reed
Think for a moment about your favorite sounds…
Music, perhaps, like the young Julie Andrews singing “I Could Have Danced All Night” from MY FAIR LADY; or the laughter of someone you love, like when my wife Gloria wins at cards for the 43rd time in a row; or Nature, the whistle of wind through a pine tree forest, the crash of surf on a distant shore, or the snarling inhalation of a Bengal tiger.
Now imagine those sounds gone: gone forever, leaving only perpetual silence.
Helen Keller, both blind and deaf, was asked which condition was more difficult. She said: “The problems of deafness are deeper and more complex…than those of blindness. Deafness… means the loss of the most vital stimulus — the sound of the voice that brings language, sets thoughts astir, and keeps us in the intellectual company of man.”
https://en.wikiquote.org/wiki/Helen_Keller
How big a problem are we talking about?
“Hearing loss is a permanent sensory disorder affecting over 278 million people worldwide. In the US… 20% suffer from this sensory deficit.
“Existing treatments aim at improving the symptoms of hearing loss, yet fail to reverse the main underlying (problem), loss of inner ear sensory hair cells.”
https://www.cirm.ca.gov/public-web-disease-focus/hearing-loss
Deep within the inner ear, inside the snail-shaped cochlea, are tiny organs with hair-like tips. Immersed in liquid, these hair cells (HC) transmit vibrations to the brain, which interprets those vibrations as sound.
We are born with a finite number of these cells, perhaps twenty thousand in each ear. As these die off–through old age, chemical poison, disease, or the blast of noise– our hearing diminishes. Lose enough hair cells, and we join the millions who are deaf.
The humble chicken can regrow its haircells; so can the silver dollar-sized zebrafish.
But not us.
Hearing aids provide a limited degree of help, as do cochlear implants: these are better than nothing. But to regain the full range of hearing, the subtlety and grandeur of sound? That is forever denied us.
Or maybe not.
If you visit Stanford (and you should, for it is both a place of beauty and an educational environment like no other) look for the Lorry I. Lokey Stem Cell Research Building. Named after the legendary friend of science, Lorry Lokey, the facility was built with his help, and Stanford’s– and a $43 million grant from the California stem cell research program.
Inside its walls, dedicated scientists and doctors fight the afflictions of humanity.
https://www.cirm.ca.gov/about-impact/creating-infrastructure
There are also two older labs, Stefan Heller’s and Alan Cheng’s, where hearing loss is also fought with stem cells, each from very different angles.
Dr. Cheng hopes for progress with an unusual source of hair cells. The utricle, a tiny organ inside the cochlea, is the center of gravity awareness. When the elevator floor drops down, or the fighter pilot swerves his jet, it is the utricle which signals us. It has hair cells (HC) very similar to those which give us hearing, but with one crucial difference: for a short time, these hair cells regenerate.
“These balance organs are unique in mammals because they exhibit a limited capacity to regenerate hair cells, an ability that non-mammalians species possess. We have been characterizing (hair cell) progenitors in the balance organs from mice and surgical patients because they will likely give us the clues to regenerating our hearing organs .”
Dr. Cheng hopes to take tissues from the utricle and see if they can be encouraged to grow hair cells for hearing. Perhaps the signals which turn on the process during early growth can be turned on again.
And how does one get a flesh-and-blood utricle, from within the cochlea?
“If a patient has a tumor in the inner ear, and surgery must be done to remove the cochlea and the balance organs, this would provide a valuable resource to improve our understanding of hair cell progenitors.”
His overall thoughts? “Regenerating hair cells in humans to restore hearing is going to be a long journey with numerous obstacles. But with the support of the California Institute of Regenerative Medicine and the Stanford Initiative in Curing hearing loss, I believe we are well positioned to overcome these challenges in years to come. —Alan Cheng, personal communication.
Taking a different approach, what if we could simply grow a few million hair cells, developed from embryonic stem cells?
Dr. Stefan Heller has been working on this simple-sounding but very complicated task for more than ten years.
“The most exciting long-term goal…is to provide an abundant source of human inner ear progenitor cells that can… routinely create human hair cells…(This would) offer for the first time…the opportunity for detailed studies of this cell type…we envisage that (the research might) result in novel treatment strategies to cure deafness and potentially other inner ear diseases…”

https://www.cirm.ca.gov/our-progress/awards/generation-inner-ear-sensory-cells-human-es-cells-toward-cure-deafness
Both scientists have received grants from the California Institute for Regenerative Medicine (CIRM, the California stem cell program), and are the recipients of numerous awards. Their lives are dedicated to the long struggle: the fight against deafness.
https://med.stanford.edu/news/all-news/2015/06/gene-discoveries-may-lead-to-regeneration-of-cells-for-hearing.html
“Curing hearing loss is a difficult endeavor and only a handful of laboratories worldwide are working on finding biological cures. Stanford aims to become one of the leading centers in the fight for a cure and plans are to further expand the existing group in the upcoming years.”—personal communication, Stefan Heller.
So the next time someone snaps their fingers, or turns on a noisy air conditioner, think of the hair cells inside your ears, and wish “Good Luck!” to the California stem cell program, and the men and women of the Stanford Initiative to Cure Hearing Loss.
https://hearinglosscure.stanford.edu/

BRAIN TUMORS vs. CALIFORNIA STEM CELL PROGRAM: Disease-a-Week Challenge #8
By Don C. Reed
When Vice President Joe Biden stood beside the coffin of his son Beau, it seemed the whole world took a breath. Every parent knew what he must be feeling: one of the most powerful men on Earth, and yet he could not save his son.
Beau Biden was diagnosed with a malignant brain cancer, possibly a glioma: the same malady which took the lives of Ted Kennedy, Gene Siskel, Susan Hayward, George Gershwin and too many others.
http://www.washingtonpost.com/news/to-your-health/wp/2015/05/31/brain-cancers-like-beau-bidens-kill-about-15000-adults-each-year/
Brain cancers like Beau Biden’s kill about 15,000 adults each year. This is a deadly condition. Even with the best treatment available—surgery, radiation, chemotherapy—survival averages only about 15 months. Untreated? From diagnosis to death– 4 months.
https://en.wikipedia.org/wiki/Glioblastoma_multiforme
Surgery? “Gliomas are often difficult to reach, due to the complex and vital pathways of the brain. Worse, these cancers do not have clean boundaries. The main tumor mass can be surgically removed, but even the best operations leave many invading cancer cells scattered throughout the brain, continuing their deadly growth. There is also the risk of damaging critical nerve pathways.”—Karen Aboody, MD, personal communication
Radiotherapy can have negative side effects. Chemotherapy drugs may be blocked from reaching the brain by the body’s own defense, the blood-brain barrier. And when they do get through, such drugs may do harm to the healthy portion of the brain as well as the tumor.
At City of Hope (COH) National Medical Center in Los Angeles, two “warrior women”, Karen Aboody, MD, Professor of Neurosciences and Neurosurgery, and Jana Portnow, MD, Associate Professor of Oncology, are searching for a better way. Many at COH have contributed significantly to the advancement of brain cancer research: Larry Couture, PhD, Behnam Badie, MD, Christine Brown, PhD, and more. But Aboody and Portnow capture the imagination: a team which has worked together for many years with very different and complementary skills.
Dr. Aboody is a strategist; she studies the battlefield, learning the enemy’s strengths and weakness, planning campaigns for its defeat.
And Dr. Portnow? She specializes in the treatment of brain tumors, and is Principal Investigator of the neural stem cell clinical trials. She designed the study protocol and oversees the running of the study.
Aboody’s early work at Harvard led to a curious fact: one kind of stem cell, a neural stem cell (NSC), is attracted to malignant and invasive tumor cells. Even if injected into the brain at a distance from the tumors, NSCs will migrate through normal tissue to seek out and target glioma sites. If injected intravenously, they will also cross the blood-brain barrier to target brain tumor sites. Dr. Aboody came to City of Hope 13 years ago to study this, and try to advance it toward patient trials.
http://www.pnas.org/content/97/23/12846
Could this NSC attraction be used to kill the cancer cells?
Think of a tiny arrow, with a triggering device inside it, as if made to detonate a bomb on contact.
The stem cells would shoot in toward the gliomas. When they arrived at just the right place, their presence would trigger a previously-inactive drug, and kill the surrounding cancer cells.
That anti-cancer drug, inactive until triggered, could be a pill.
If the procedure works, the stem cells would essentially produce localized chemotherapy in the brain: sparing normal tissues from toxicity and potentially decreasing the side effects so common to chemo.
How would it be tested on people?
Enter Dr. Portnow. Like a battlefield general, she leads the charge, working with the patients all the way. The initial first-in-human safety study, completed in 2013, showed no negative responses from the body’s immune system. It also provided proof that the anti-cancer agent was activated exactly where it was supposed to: at the brain tumor site.
http://meetinglibrary.asco.org/content/117594-132
In 2014, Dr. Portnow launched a Phase 1 dose escalation, multi-treatment clinical study—currently ongoing at City of Hope.
Here is how the new procedure works:
At the time of surgery, to remove a recurring glioma mass, the patient receives injections of the neural stem cells. The patient also has a small catheter inserted in the brain, for further rounds of outpatient treatment. After each stem cell infusion, the patient goes home and takes an inactive drug for 7 days. The stem cells convert it to an anti-cancer agent in the brain.
This current trial should be completed in two years.
And the next generation? Jump back to 2010, when Drs. Aboody, Portnow, and Couture received an $18 million grant from the California stem cell program to bring a second generation NSC treatment to patient trials. This treatment may be more potent than the first, and (importantly) can also be applied to cancers outside the brain. It was a five-year effort, leading to the filing of a new IND (Investigational New Drug) application to the Food and Drug Administration (FDA). It is hoped this second treatment will reach patients in human trials within 12 months.
Building toward the future, the California stem cell program provided an additional $8 million to establish the City of Hope as an “Alpha Site”, one of three dedicated headquarters across the state, prepared to carry out more such clinical tests in this and other areas of chronic disease.
Three patients have received the new therapy; more are being recruited.
Help is on the way, to defeat this previously incurable condition.
Maria Millan, Senior Director of Medical Affairs for the California Institute for Regenerative Medicine, had this to say:
“…by working together, providing collective expertise, efficiencies and critical resources, we can help accelerate the development of stem cell treatments for patients with unmet medical needs. This is the start of something truly unique.”
http://www.cityofhope.org/stem-cell-clinic-treats-its-first-patient

Please share this extremely important note from long-term patient-rights advocate Bill Remak and Liz Helms:

The California Chronic Care Coalition (CCCC) is launching a website to educate patients about their rights and help them get to the right place when they have been denied care or experience barriers. With health plans restricting access to care, patients being denied care, access and being balance billed, they don’t know how to navigate the system.

Below is a release about a new website – http://www.mypatientrights.org – that will educate consumers about their health care rights and direct them where to file complaints with their health plan and/or the California Department of Managed Health Care (DMHC).

Thank you,

Liz Helms

MyPatientsRights.org to Educate Consumers and Drive Health Plan Complaints

California Chronic Care Coalition working to reduce barriers to care

SACRAMENTO, Calif. (July 9, 2015) – Today, the California Chronic Care Coalition (CCCC) launched MyPatientsRights.org, an online resource for California health care consumers who are denied coverage, experience delays or are dissatisfied with the decisions made by their health plan.

“MyPatientRights.org is a beacon of light in a stormy health care sea,” said Liz Helms, president and CEO of the CCCC. “As health plans are moving to reduce access to new lifesaving medicines, create one-size-fits-all treatment pathways and restrict access to specialists, we must provide consumers with the help and confidence they need to demand the care they deserve.”

The CCCC, an alliance of more than 30 leading consumer, health and provider organizations, is working to help ensure consumers know their rights and avenues of recourse under managed care organizations. Through this website, the coalition will help educate consumers about their health care rights and direct them in where to file complaints with their health plan and/or the California Department of Managed Health Care (DMHC). The DMHC has a strong track record of helping the more than 20 million Californians in DMHC-regulated plans. In 2014, the DMHC assisted more than 100,000 Californians in resolving issues or complaints with their health plan.

The types of complaints regulators collect include:

· Denials to specialists

· Denials to important procedures

· Barriers to prescription medicines

· Delays receiving tests for chronic diseases

· Medical bills from out-of-network providers

· Balanced billing issues

“California’s health plans claim they receive very few complaints from patients, yet we know that the majority of consumers do not complain because they do not know how to do so or are intimidated by the process. By ensuring that complaints are registered, we will be able to determine where there are pervasive access and affordability issues for California consumers, rather than rely on anecdotal information from news stories, advocacy organizations, and providers,” said Joan Werblun, RN, board member of the California Health Collaborative, a CCCC partner.

Several members of the CCCC, including Helms, have been fighting for patient rights for the past twenty years. They were leaders in the creation of the Office of the Patient Advocate (OPA) and the Department of Managed Health Care (DMHC).

The website includes a list of patient rights and step-by-step instructions to file a complaint with a health plan, DMHC and/or DOI. It also includes testimonials from real patients who have experienced lengthy delays or denials. In addition, the website will collect patient stories to provide a true picture of the quality of care provided throughout the state.

“Navigating today’s health care system is complicated enough without having to figure out how to file a complaint and ensure your voice is heard,” said Bill Remak, board member of the CCCC and California Hepatitis C Task Force. “By helping patients file a complaint with the DMHC and DOI and contact their health plan, we have the opportunity to change the system and keep Californians healthy.”

The website will only be successful if consumers know it exists. To ensure it reaches those in need, the coalition is asking every patient advocacy organization in the state to add a MyPatientRights.org widget to their website(s) and will educate and engage California legislators and other elected officials, medical providers, pharmacies, consumer groups and the media to help spread the word.

Please visit http://www.MyPatientRights.org for more information.

About The California Chronic Care Coalition

The California Chronic Care Coalition (CCCC) is a unique alliance of more than 30 leading consumer health organizations and provider groups that engage policy makers, industry leaders, providers and consumers to improve the health of Californians with chronic conditions. We envision a system of care that is accessible, affordable and of a high quality that emphasizes prevention, coordinated care and the patient’s wellness and longevity. http://www.chroniccareca.org/

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