Disease Sufferers Lobby at Biotech Conference

Posted on: Friday, 11 May 2007, 21:00 CDT
http://www.redorbit.com:80/news/heal...ource=r_health

BOSTON _ Patients offer poignant reminders of the high stakes involved in connecting the biotechnology dots.

After all, for them it's a matter of life and death.

Carrie Smith was a country singer in Nashville, Tenn., with a new baby and a promising career when doctors told her in 2002 that multiple sclerosis was causing her excruciating leg pains, severe dizzy spells and other symptoms.

"I wasn't able to sing. I wasn't able to be a good wife. And I wasn't able to care for my daughter," Smith said.

Smith eventually began treatment with Rebif, a medication marketed by EMD Serono Inc. and Pfizer Inc. The results were dramatic, she said, adding that she felt confident enough to carry her child again and resume playing music.

"I feel like my life was given back to me," Smith said.

Celebrating breakthroughs in basic research and chasing big business deals are the usual focus of the nation's largest biotechnology conference. But people suffering devastating diseases sought to use BIO 2007 this week to lobby for quicker access to cures. Indeed, they were invited.

Actor Michael J. Fox, who started a foundation that funds research after he was stricken with Parkinson's disease, challenged the industry to remove obstacles slowing or even blocking new cures. He argued that more progress should be expected from an enterprise driven by brilliant minds and backed with billions of dollars.

"American taxpayers are funding the greatest discovery engine in the world, yet we fail to provide incentives for our scientists to convert their relevant findings into improvements in human health," said Fox, who lives with recurring tremors, in a keynote address at BIO 2007.

Lori Lober, a Kansas City, Mo., cancer survivor, echoed Fox.

Seven years ago doctors told Lober she had an advanced case of breast cancer that had spread. Chances of survival, they said, were slim.

Lober overcame the odds thanks to treatment that included a drug produced by biotechnology industry pioneer Genentech Inc.

"The traditional therapy offered me no hope," said Lober, who later founded the Touched by Cancer Foundation.

It remains to be seen how well the words of Smith, Fox and Lober will be heeded.

The BIO conference caters to companies touting biotech breakthroughs with hopes of attracting investor cash and state officials pitching incentives with hopes of landing economy-boosting prospects.

This year was no exception. BIO 2007 drew more than 22,000 officials from around the world. Missouri Gov. Matt Blunt and U.S. Sen. Pat Roberts of Kansas were among those representing 48 states and numerous foreign countries that jostled for attention on a sprawling convention floor.

Making the biggest economic-development splash was Gov. Deval Patrick of Massachusetts, a state already rich with top universities, a bustling base of venture-capital firms and a powerful hub of biotech companies.

Patrick announced a plan to channel $1 billion over 10 years to build new life sciences centers, provide research grants and distribute new batches of stem cells to scientists.

Kansas officials, meanwhile, drew attention to their $588 million initiative.

Blunt met with company officials and talked up his plans to channel more money toward higher education and research.

Such efforts are expected to help the economy. But it is also important to remember the ultimate aim of many biotechnology endeavors, Blunt said in an interview at Missouri's pavilion playing up a "Built for Biotechnology" theme.

"The benefits for mankind with this technology are so tremendous," he said. "That is something we should never lose sight of. To help patients, that is what this is really about."

Cracking the genetic code with the Human Genome Project and other biotech advances have spawned an era of previously unimaginable possibilities, said Greg Simon, president of advocacy organization FasterCures.

Cancer, amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease), Parkinson's and cystic fibrosis are among the maladies that innovations emerging from medical research labs are likely to fell, Simon said.

"In the lifetime of my generation, most of the diseases we are dealing with, if not cured, should be turned into treatable chronic diseases," Simon said.

But while the science is promising, Simon said, other factors were worrisome:

_Researchers must do a better job of collaborating.

_More money must be directed to translating discoveries into therapies.

_Greater attention must be paid to filling gaps in a system that can require 17 years to take an idea for a treatment to a new drug.

"The system we have won't get there," Simon said. "We have to have a new system."

Leaders at the Ewing Marion Kauffman Foundation in Kansas City also have identified the same roadblocks. They are joining Simon and others in campaigns to remove them.

The federal government has been the dominant source of funding for medical research. But new organizations are emerging with the power to force changes, said Lesa Mitchell, a Kauffman Foundation vice president who helped organize and moderate a panel discussion at the conference.

The Bill & Melinda Gates Foundation, The Michael J. Fox Foundation, the Stowers Institute for Medical Research in Kansas City and various initiatives of former Wall Street financier Michael Milken are among the philanthropic ventures pumping major money into medical research. Some projections, Mitchell said, indicate these private sources could soon surpass federal funding.

Put simply, those who write the checks can write new rules.

With federal money more challenging to obtain, scientists will respond to foundation requirements such as discoveries being announced more quickly and widely. Foundations also are demanding focus on cutting-edge areas rather than well-trod paths likely to produce successful experiments but few major advances.

"We are seeing the philanthropists pushing the envelope," Mitchell said.

Both patients and philanthropists are getting more attention from the industry.

Jim Greenwood, chief executive of the Biotechnology Industry Organization, made sure foundations and patients had prominent slots at this year's conference. He also included them in forums aimed at matching companies with investors and peers who might work on new projects.

"We are giving people the opportunity to custom-make deals in a way I don't think is happening right now," Greenwood said in a recent interview.

Foundations want to pay for cures, disease groups need help and biotech companies must pursue the most lucrative projects if they hope to survive. Mixing the three groups can provide new solutions to the problems they all face.

"Put all those things together and you get some really interesting combinations," Greenwood said.

Darren Baker suddenly saw the significance of his life's work in a new light when he became a patient.

A researcher at Biogen Idec, a Cambridge, Mass., biotechnology company, Baker was diagnosed with non-Hodgkin's lymphoma after seeing his doctor in 2003 about a pain in his chest.

Baker received treatment with Rituxan, a drug developed by his employer.

He described his time as a patient as a "quite eye-opening" experience and the source of a newfound motivation for his own scientific work.

"Nothing drives a researcher more than to see a drug in the clinic helping people," Baker said. "I hope biotechnology continues to deliver on the promise."

What an interesting and factual article. Thank you for sharing this, Carolyn. Being among those 22,000 at the BIO meeting this week, I agree that the CEO (Greenwood) made a real effort to include patient groups and orgs in this year's meeting.

The Parkinson's Disease Foundation's program - PDTrials - and the Parkinson Pipeline Project were exhibiting on the front end of the advocacy groups. We were flooded with visitors, and our website's hits skyrocketed as a result of us giving out cards and fact sheets.

We should all be doing our part to speed up the drug & treatment approval process:
1. By considering participation in a clinical trial
2. By spreading the awareness about living with PD
3. By demanding your rights to information on research
4. By helping raise funding for research

. . . and the list goes on. Have a heart - do your part!

Peg

I would never allow "them" to put me in a drug study - or a clinical trial
because, I do not trust what they have done to many people under the guise of medicine,

look at all the lawsuits!
medicine and doctors kill more people than they help, read the real stat's.

they need us to be ill, I really know you have tried very hard, but money will never be enough to buy a cure, we have cures already, but the drug lords,
who control most of the government aka big pharma is not going to allow
cures,

never forget the gdnf tradgedy!!.



Death by Medicine

By Gary Null, PhD; Carolyn Dean MD, ND; Martin Feldman, MD; Debora Rasio, MD; and Dorothy Smith, PhD

Something is wrong when regulatory agencies pretend that vitamins are dangerous, yet ignore published statistics showing that government-sanctioned medicine is the real hazard.

Until now, Life Extension could cite only isolated statistics to make its case about the dangers of conventional medicine. No one had ever analyzed and combined ALL of the published literature dealing with injuries and deaths caused by government-protected medicine. That has now changed.

A group of researchers meticulously reviewed the statistical evidence and their findings are absolutely shocking.4 These researchers have authored a paper titled “Death by Medicine” that presents compelling evidence that today’s system frequently causes more harm than good.

This fully referenced report shows the number of people having in-hospital, adverse reactions to prescribed drugs to be 2.2 million per year. The number of unnecessary antibiotics prescribed annually for viral infections is 20 million per year. The number of unnecessary medical and surgical procedures performed annually is 7.5 million per year. The number of people exposed to unnecessary hospitalization annually is 8.9 million per year.

The most stunning statistic, however, is that the total number of deaths caused by conventional medicine is an astounding 783,936 per year. It is now evident that the American medical system is the leading cause of death and injury in the US. (By contrast, the number of deaths attributable to heart disease in 2001 was 699,697, while the number of deaths attributable to cancer was 553,251.5)

We placed this article on our website to memorialize the failure of the American medical system. By exposing these gruesome statistics in painstaking detail, we provide a basis for competent and compassionate medical professionals to recognize the inadequacies of today’s system and at least attempt to institute meaningful reforms.

Continued on Page 2 of 6


Medical Ethics and Conflict of Interest in Scientific Medicine
Jonathan Quick, director of essential drugs and medicines policy for the World Health Organization (WHO), wrote in a recent WHO bulletin: "If clinical trials become a commercial venture in which self-interest overrules public interest and desire overrules science, then the social contract which allows research on human subjects in return for medical advances is broken."(19)

As former editor of the New England Journal of Medicine , Dr. Marcia Angell struggled to bring greater attention to the problem of commercializing scientific research. In her outgoing editorial entitled “ Is Academic Medicine for Sale?” Angell said that growing conflicts of interest are tainting science and called for stronger restrictions on pharmaceutical stock ownership and other financial incentives for researchers20) “When the boundaries between industry and academic medicine become as blurred as they are now, the business goals of industry influence the mission of medical schools in multiple ways.” She did not discount the benefits of research but said a Faustian bargain now existed between medical schools and the pharmaceutical industry.

Angell left the New England Journal in June 2000. In June 2002, the New England Journal of Medicine announced that it would accept journalists who accept money from drug companies because it was too difficult to find ones who have no ties. Another former editor of the journal, Dr. Jerome Kassirer, said that was not the case and that plenty of researchers are available who do not work for drug companies.(21) According to an ABC news report, pharmaceutical companies spend over $2 billion a year on over 314,000 events attended by doctors.

The ABC news report also noted that a survey of clinical trials revealed that when a drug company funds a study, there is a 90% chance that the drug will be perceived as effective whereas a non-drug-company-funded study will show favorable results only 50% of the time. It appears that money can't buy you love but it can buy any "scientific" result desired.

Cynthia Crossen, a staffer for the Wall Street Journal.



--------------------------------------------------------------------------------
http://www.lef.org/magazine/mag2004/...i_death_01.htm

continued from

Death by Medicine

WOMEN'S EXPERIENCE IN MEDICINE

Dr. Martin Charcot (1825-1893) was world-renowned, the most celebrated doctor of his time. He practiced in the Paris hospital La Salpetriere. He became an expert in hysteria, diagnosing an average of 10 hysterical women each day, transforming them into “iatrogenic monsters” and turning simple “neurosis” into hysteria.(96) The number of women diagnosed with hysteria and hospitalized rose from 1% in 1841 to 17% in 1883. Hysteria is derived from the Latin “hystera” meaning uterus. According to Dr. Adriane Fugh-Berman, US medicine has a tradition of excessive medical and surgical interventions on women. Only 100 years ago, male doctors believed that female psychological imbalance originated in the uterus. When surgery to remove the uterus was perfected, it became the “cure” for mental instability, effecting a physical and psychological castration. Fugh-Berman notes that US doctors eventually disabused themselves of that notion but have continued to treat women very differently than they treat men.(97) She cites the following statistics:

Thousands of prophylactic mastectomies are performed annually.
One-third of US women have had a hysterectomy before menopause.
Women are prescribed drugs more frequently than are men.
Women are given potent drugs for disease prevention, which results in disease substitution due to side effects.
Fetal monitoring is unsupported by studies and not recommended by the CDC.(98) It confines women to a hospital bed and may result in a higher incidence of cesarean section.(99)
Normal processes such as menopause and childbirth have been heavily “medicalized.”
Synthetic hormone replacement therapy (HRT) does not prevent heart disease or dementia, but does increase the risk of breast cancer, heart disease, stroke, and gall bladder attack.(100)
As many as one-third of postmenopausal women use HRT.(101,102) This number is important in light of the much-publicized Women's Health Initiative Study, which was halted before its completion because of a higher death rate in the synthetic estrogen-progestin (HRT) group.

does this make anyone feel safe?

CTenaLouise,
I only got formally dxd PD because I volunteered for a nerve function trial, although I'd known something was wrong with my left side for many yrs. I'll volunteer for any PD related trial I can get on to if I believe it will forward treatment - I don't believe there is a 'cure' as such.
Following another thread - my L side symptoms included frozen shoulder, elbow, knee & ankle all attributed to osteo arthritis. My heart is fine.

you assume too much my dear jeanb -for I have in fact been on a drug trial ever since they declared me ill with PD in 1994...

I will make this very clear

There should be consequences for every script a doctor gives out.
Definition: importance, significance.
"Do no harm" doesn't mean the opposite
Antonyms: insignificance, unimportance, worthlessness

WE ARE HUMAN BEINGS not lab animals.

even though I should have known this -
I have put my life on the line, my only childs life on the line
by trusting doctors -that are not trustworthy.

I have been on drug trials -
we all have -

I will make this very clear I will never sign a paper stating:
I will give my life and my rights to liberty up
so that I may never be able to hold the BIG PHARMA responsible!

If in fact they break the contract by not allowing my own body to be mine
solely.
and that if I have their drug in my body it then belongs to me and the pharma company -and if they put mechanical implaments in my body they become mine because they are in fact on my land / body.
and they have no rights to pull the plug! I will have my rights to pull or not to pull the contract!

monsanto stold a farmers land because he used their chemical he bought and paid for called - roundup
and where he sprayed the roundup.
the farmers crops showed they had become genetically identical to monsanto owned seed. [patented]
therefore monsanto stole his land -

if the big pharma puts their patented chemical/ in my body it is mine -and they must be held to that contract or be sued, even if I decide to continue the use of the drug -it is now mine! even if I choose to die, it is mine!

For anyone a doctor prescribes a medicine to that we have never had enter our own bodily systems - we have been put on trial for drugs!

and if we get addicted to oxycontin or whatever they want to change the name to cotton candy?, and the doctors refuse to acknowlege, the doc and the pharma company are very much responsible to "DO NO HARM"
and by using this drug - we wind up behind bars for buying it on the street --- because the doctors will not be held responsible to titrate us down then the doctors should be arrested as well!

I took MIRAPEX - bad bad results for me!

the first time I was given Sinemet - I vomited and vomitted!
so I had to get another drug called domperindone to ease the extreme nausea!

Every drug we take we have a chance that it will help us/ or harm us!

then next step more drugs! the depression and the anxiety meds!!!
Why dont we just slap a sticker on our backs that says - SUCKER HERE!

Well asfar as I am concerned - they should pay us!
They should be responsible for life insurance policies, if in fact we die...

All professionals in the medicine world have a responsibility to "do no harm"...

some actual stats from - Death by Medicine.

What you are about to read is a stunning compilation of facts that documents that those who seek to abolish consumer access to natural therapies are misleading the public. Over 700,000 Americans die each year at the hands of government-sanctioned medicine, while the FDA and other government agencies pretend to protect the public by harassing those who offer safe alternatives.

A definitive review of medical peer-reviewed journals and government health statistics shows that American medicine frequently causes more harm than good.

Each year approximately 2.2 million US hospital patients experience adverse drug reactions (ADRs) to prescribed medications.(1) In 1995, Dr. Richard Besser of the federal Centers for Disease Control and Prevention (CDC) estimated the number of unnecessary antibiotics prescribed annually for viral infections to be 20 million; in 2003, Dr. Besser spoke in terms of tens of millions of unnecessary antibiotics prescribed annually.(2, 2a) Approximately 7.5 million unnecessary medical and surgical procedures are performed annually in the US,(3) while approximately 8.9 million Americans are hospitalized unnecessarily.(4)

As shown in the following table, the estimated total number of iatrogenic (Induced in a patient by a physician's activity, manner, or therapy)

deaths—
that is, deaths induced inadvertently by a physician or surgeon or by medical treatment or diagnostic procedures— in the US annually is 783,936.
It is evident that the American medical system is itself the leading cause of death and injury in the US . By comparison, approximately 699,697 Americans died of heart in 2001, while 553,251 died of cancer.(5)

Table 1: Estimated Annual Mortality and Economic Cost of Medical Intervention
Condition
Deaths
Cost
Author
Adverse Drug Reactions:


to look at the charts
follow this link -and go to page 2- and 3 of 6
in DEATH BY MEDICINE...

http://www.lef.org/magazine/mag2004/...i_death_02.htm

goodday dear jeanb.

dearest JackM,
I am so so sorry they hurt you!
I have heard this too many times, and it is very unconscionable.

TenaLouise
I dont want to get into an all out argument, because I believe that anyone is entitled to his or her opinion. But I do want to bring some interesting information to the surface about the author of the report you quoted.

Gary Null, PhD can be found in the reliable Quackwatch information. I will just show you an excerpt here - you can read the entire report on your own:

Null is prone to see conspiracies behind many of the things he is concerned about. One of his targets has been the pharmaceutical industry, which, he says, "cannot afford to have an alternative therapy accepted." He promotes hundreds of ideas that are inaccurate, unscientific, and/or unproven. He calls fluoridation "deadly" and has spoken out against immunization, food irradiation, amalgam fillings, and many forms of proven medical treatment. His series on "The Politics of Cancer," which was published in Penthouse magazine in 1979 and 1980, promoted unproven methods that he said were being "suppressed" by the medical establishment. His lengthy series, "Medical Genocide," began appearing in Penthouse in 1985 with an article calling our medical care system a "prescription for disaster" and claiming that modern medicine has had virtually no effect on heart disease, cancer, and arthritis [1]. Other articles in the series promoted chiropractic and homeopathy, claimed that effective nutritional methods for treating AIDS were being suppressed, claimed that chelation therapy was safe and effective for treating heart disease, and endorsed several treatments for cancer that the American Cancer Society recommends against. His Web site contains a huge amount of misinformation and bad advice.
source: http://www.quackwatch.org/04ConsumerEducation/null.html

I was speaking to a patient group in Germany this past summer about the trial I participated in. There was a neurologist in the crowd who made the comment that "this trial requires invasive surgery, so entering it is risky." I was quick to respond, "Living with Parkinson's is risky, too."

We have used levadopa (L-dopa - with carbidopa - Sinemet brand name) as the gold standard for 40+ years now. Yes, it works well - but it has major side effects when used as long-term therapy. I have had PD for 12 years - and I can still function pretty well. But my clock is ticking. And I guess what motivates me to help find better treatments is knowing that my children or grandchildren may get this disease.

True, the clinical trial process has flaws, but it's still safer than some of these foreign countries where anything is allowed and may end up costing the participant a load of money. It is up to us to monitor the trial process and keep things on the up and up. This is one of the functions of the Parkinson Pipeline Project.

Instead of boycotting the drug and treatment approval process, why not work with those responsible to improve it?
Peggy

Quakwatch is not acceptable!
they are the nay sayers to everything!!
not acceptable excuse...
it rates right up ther with FOX TV...

I am not arguing with you peg, I am stating my humble opinion.

here is quakwatch on the subject of mercury!
we know mercury is deadly -and should not be put in vaccines

Quakwatch says:
The "Mercury Toxicity" Scam:
How Anti-Amalgamists Swindle People
Stephen Barrett, M.D.


http://quackwatch.org/01QuackeryRela...s/mercury.html

Quackwatch sued pdf

http://www.courtinfo.ca.gov/opinions...ve/S122953.PDF

Incentives must be provided. This includes incentives for the patient. Most don't live near a clinical trial center and know nothing about them. If physicians are paid to recommend them, patients should be paid for participating in them. Regulation is required and parameters set.

Patients should no longer accept being treated like second class citizens who should blindly follow a doctor. Housing is needed and it would be very helpful to open care centers at research universities. Even if there aren't that many clinical trials, the med students and researchers could observe and get to know PD before they start their research.

Would a teacher go through a degree without ever working with a kid?
paula