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Medical mysteries part two

Posted: Tuesday, May 13, 2008 1:59 PM by Barbara Raab

By Robert Bazell, Chief science editor

For many young scientists this is a very distressing time.  The federal government’s support for basic research through the National Institutes of Health has slowed vastly from what it was a decade ago. As a result, many people who were looking to careers in basic science simply can’t find them.

 

I mention that because tonight’s story in our series Medical Mysteries about auto-immune diseases looks at rheumatoid arthritis where there is some success.  To be sure, there is not a cure.  But doctors have more and more drugs for treating RA, an auto-immune disease that strikes the joints and other parts of the body. RA afflicts more than two million Americans, 70 percent of them women, and can leave people horribly crippled if not treated effectively.

 

The discovery of those drugs is the result of basic research into the immune system,  the exquisitely complex set of  blood cells and antibody proteins that defends against diseases.  Chemicals in our body called cytokines are the signaling mechanism of the immune system –- setting off the alarm of an invasion of viruses or bacteria.  As basic researchers have discovered more of those cytokines and how they direct the immune system, they have been able to design drugs to selectively dampen the immune response in people with auto-immune diseases, and lessen the disease.

 

Of course if the basic research slows, so will the drug discovery that for this disease has been growing ever more successful.

 

For more information about rheumatoid arthritis I would recommended starting with the Arthritis Foundation website.

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IF HILLARY IS THE STRONGER DEMOCRAT WHY IS ALL OF THE REPUBLICANS ON THE RADIO AND TV TALK SHOWS ROOTING FOR HER RATHER THAN BAROK?
The patients you profiled looked wonderful compared to some others who have suffered with the disease for years. My mother was diagnosed with RA over 15 years ago and lives every day in pain. She has tried every drug there is and has been through painful hip replacment surgeries ....Stating that all drugs don't work for all patients is an understatement - to say the least. And why no mention of possible hereditary connections or possible causes? We don't know what causes RA and other auto-immune diseases, but what are we doing to find out? Having said that, I do appreciate the attention and public awareness the story initiates.
Who was the doctor in the news clip tonight? Was he from Palo Alto?
Treatments for RA are truly miracle drugs but they are extremely expensive. It is important in reporting on these drugs you also cover the cost and cost barriers many patients face.
More insurance plans are treating these drugs and new bio-engineered cancer drugs as tier 4 drugs which require patients to pay a significant percentage of the total price of the drugs, often thousands of dollars a treatment.  If you are uninsured you must be very poor to qualify for Medicaid or for the company sponsored low cost or free drugs.  
For many uninsured patients access to these miracle drugs is just a dream they continue to live in pain and with disability.  
Hi, I have Rheumatoid Arthritis and was on Humira for about 2 years and felt it helped with the pain, stiffness and fatigue.  With past insurance companies, my co pay was $35.00 each month for 2 injections every 2 weeks.
I had to change insurance companies the beginning of this year and in order for me to continue my Humira treatment since it is a tier 4 drug, I would have to pay $500.00 a month or 1/3 of the cost of the drug.  I would like to suggest you add to the story about these new drugs that can help people with RA.  Maybe the drug companies would consider lowering the cost so more people could get help.
It is painfully obvious that the entire medical and research communities have no idea why autoimmune diseases occur.  Otherwise there would be some real cures, by now.  The usual explanation is that "the immune system does awry."  Wrong.  Not just a little; completely wrong.  What am I offered for the real answer?
Does anyone know how to contact the Dr from Stanford University that was shown in this storey tonight?
Robert, I certainly hope you read these.  I stopped what I was doing to see your story today on RA.  I have to say it was disappointing report.  

I've had RA since I was 8 years old. Im 44 now. the damage that i've sustain starts at my fingers, goes to my wrists, neck, feet, toes, I've had 2 hit replacements and even with the issues I'm very high functioning. I live a full life because of the drugs you only touched and didn't get into any deep detail.

It would have been nice if you went a little more in depth about the products that are currently on the shelf. Discuss their overwelming price tags and the amazing benefits they provide.

I've used everything from the Remicade to Humira to Embrel.  They all have their benefits.  

Why don't you call me and we can discuss it.  Im sure you'd like to have a real story on what RA sufferers go through.  Im the poster boy.

Hope to hear from you.
I WAS JUST DIAGNOSIS WITH POLYMYALGIA RHEUMATICA. I COULD HARDLY WALK , END UP IN E ROOM, BEFORE I GOT DIAGNOSIS.NEVER HEARD OF THIS. ITS IN MY LEGS & ARMS GOT REAL STIFF &PAIN.
Your report on R/A on May 13 have me puzzled. Are you talking about treatments already on the market or something new. I know you may not want to mention any brand names.
I have Rheumatoid Arthritis, I'm the 30% male that have it. But there is no history of my family having any. Im very interested in more types of treatment.
FROM ROBERT BAZELL:

The doctor interviewed for the report was Mark Genovese of Stanford (http://med.stanford.edu/profiles/Mark_Genovese/). As for the costs of the drugs, many are indeed terribly expensive -- often prohibitively so for people with no health insurance. These drugs are products of biotecholgy and like some of the neweer targeted cancer therapies, they can cost many thousands of dollars a year.
I have had RA and Srojens syndrome since I was 16.  Have had good years and bad years. This is a bad one.  Saw Rheumatologist the other day, told him I didnt want the IV treatments because I am the mother of a 13 yr old that needs me--would rather hurt then take the chance. Just came off of prednisone-not handling it well, no one understands...they can't see the pain I feel!!!  Thanks for bringing this to the publics attention.
I need to know if Stanford is doing any reseach study on Sjogren Syndrome.  
Thanks,
What about Cannabis? Cannabis has been linked to positive effects for Arthritis and MS as well as many others..  Amd, it's free! (If you have a green thumb).
Your report on May 13 ,2008, regarding Rheumatoid Arthritis was very disappointing for my wife who has endured this painful disease for 25 years. What are these new drugs you spoke about? Were you speaking of Enbrel, remicaid, orencia, rhituxin( SP?), which have been on the market for   2 or 3 + years or were your reporting something truly new? My wife would be grateful if you would identify the new medications you were speaking of- surely there are no restrictions ,ethical or otherwise, on identifying these medication by name. Philip Tierney, Mclean Virginia
My daughter is 34 yr single mother of two. She has had RA for over four years. She has RA and Osteo on her right knee and also has it on her left ankle. She gives herself shots of Enbrel she takes Steroids, Chemo, and takes Oxi Codden three time a day. I have tried to have her referred to Standford Hospital but the Clinic will not do it because they are not affiliated with them. She needs a knee replacement because there is no Cartlidge left in her knee. She is in pain everyday I wish she could be seen at Stanford or UCD but there is so much red tape with her health insurance and the clinic where she goes to. Is there any thing she can do to get better? Should she be doing something else? Her quality of life is so poor and I feel like my hands are tied because I am not financially able to do anything for her.      



My daughter is 34 yr single mother of two. She has had RA for over four years. She has RA and Osteo on her right knee and also has it on her left ankle. She gives herself shots of Enbrel she takes Steroids, Chemo, and takes Oxi Codden three time a day. I have tried to have her referred to Standford Hospital but the Clinic will not do it because they are not affiliated with them. She needs a knee replacement because there is no Cartlidge left in her knee. She is in pain everyday I wish she could be seen at Stanford or UCD but there is so much red tape with her health insurance and the clinic where she goes to. Is there any thing she can do to get better? Should she be doing something else? Her quality of life is so poor and I feel like my hands are tied because I am not financially able to do anything for her.      





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