Can I rant for a minute?

[Dick S]

I realize I am probably "wailing into the wind" and I know I am "preaching to the choir" and maybe, like Don Quixote, I am tilting at windmills, but I just get so mad at this disease sometimes, I could spit and I need to rant. I guess it's the daily dragging around the house that gets to me.

I talked on the phone sometime back to a lady who has suffered with MDS for twenty years and she calls it the "not enough disease". There are "not enough" people like us who get it each year. There are "not enough" people who care we have it or understand it. There is "not enough" research. There are "not enough" researchers working on it. There is "not enough" money to find the cures. There are "not enough" drugs to fight it. There are "not enough" cures or remedies. There is "not enough" being done about it. And I could go on and on about "not enough', but you get the point.

With older people like me, they can't do bone marrow transplants or SCTs and the medications seem to be less affective and tougher on us anf I know I can't fight the disease alone. And you want to ask yourself...."why me?"... "why the not enough disease?". It dawned on that IF this was happening to kids or animals, the whole world would be "up in arms" with telethons and fund raisers and such to find a cure. Don't get me wrong, kids, especially those with leukemia need all the attention, medicine and care they can get and deserve.... they are little brothers and sisters in kind with us. But why do we have to get the older "not enough" disease?

I hope I am wrong, but after the AA&MDS Conference in July and we get to talk to the Congressmen and Senators and plead our case for funding to help to fight this disease, I hope, after all is said and done, they don't look back on what was said and just come to the conclusion "oh well, not enough people have it and it doesn't look like such a big deal", so whats the hurry in funding and finding a cure.

Thank you for letting me rant....I almost feel better now.

Dick

[Ruth Cuadra]

Dick, you are so right that "not enough" is one of the basic problems with having MDS--or aplastic anemia or PNH or any one of a large number of other diseases that affect only a relatively small number of people. But I'm glad you focussed on something we CAN do to help get more money and resources directed at solving the problems of bone marrow diseases. The Capitol Hill Advocacy Day that the AA&MDSIF is organizing in conjunction with the Patient Conference in July will give us a chance to be heard by people who are in a position to help us. Anyone can participate in the Advocacy Day even if they don't attend the Conference.

Thanks for speaking up.

Regards,
Ruth

[Dick S]

Originally Posted by Ruth Cuadra

But I'm glad you focussed on something we CAN do to help get more money and resources directed at solving the problems of bone marrow diseases. The Capitol Hill Advocacy Day that the AA&MDSIF is organizing in conjunction with the Patient Conference in July will give us a chance to be heard by people who are in a position to help us. Anyone can participate in the Advocacy Day even if they don't attend the Conference.

Thanks for speaking up.

Regards,
Ruth

No, thank you for letting me spout off, it's nice to have a place like this forum where we can "let go" amoung others who understand. I get so tired and frustrated with this disease sometimes, I just have to vent to keep from getting down on myself or getting depressed. In a way it helps me keep on fighting. I do so hope that the Advocacy Day and Conference will enlighten the right people so we are all not just forgotten and "wailing in the wind".
Ruth, thank you, it means so much to me.

[Birgitta-A]

Hi Dick,
Everybody with this disease will loose hope sometimes. Still if you look at clin trials gov you will find 827 trials for MDS (many of them are for AML too). That is much more than 5 years ago.
http://clinicaltrials.gov/ct2/results?term=mds

Then I read an abstract about prognosis in MDS patients - we live more than twice as long as we did 1980-90. Treating iron overload is important and then we have Vidaza and Dacogen. The new histone deacetylase inhibitors like MGCD0103 have shown good results in trials.
Kind regards
Birgitta-A

[paulaespada]

Hello!

You put in words what I feel many times.
It's not fair just because you're not animals or kids - with all respect for kids.

I'm with you!

[Marlene]

Dick,

There's a book you need to read before you head to the US Captiol...It's called "Our Daily Meds" by Melody Peterson. I just finished it and am still trying to recover emotionally from it. She lays out how the pharmaceutial industry is more about marketing than science. Medical decisions are based on drug company's marketing instead of good science. One thing that stood out for me because it's an issue we all face with MDS/AA/PNH is cost of medication. One drug executive basically admitted that they take into account the following when setting a price for the drug....1) The fewer the options, the higher the price; 2 - The greater the desperation, the higher the price; and 3 - The greater the suffering, the higher the price. This just breaks my heart to hear this and the many other things they do for profit. Saving lives has become secondary.

She addressed so many things that have gone wrong with our medical model that I think you'll find it interesting. One drug guy said "there are two things that will kill a drug" "one is that it kills too many in the clinical trial and second is that it cures someone". Repeat/lifelong customers is the goal.

Anyways....I just thought this post was timely for me since I just finished the book and thought others might find the book interesting. It certainly gives you something to think about. The final message is to have a "healthy skepticism" when it comes to taking drugs or undergoing any medical procedure.

Marlene

[Dick S]

Thanks Marlene, what you say makes a lot of sense. I'll see if I can't find a copy of the book.

[Marlene]

You'll have to let me know what you think of it should you get the chance to read it.

M

[Neil Cuadra]

Pharmaceutical companies are indeed businesses, just as doctors, hospitals, and insurance companies are businesses. Their interests don't always align with those of patients, or with each other's.

When drugs command high prices, part of that money is profit, part covers the research and development that went into developing, testing, and marketing that drug, and part goes toward the pharmaceutical company's overhead, including the hefty bill for research and development into drugs that didn't turn into successful commercial products.

With rare diseases like ours, there's a smaller potential market for each drug, i.e., less potential income for drug manufacturers. If it were entirely up to market economics, why would they work to develop a drug for MDS if they could develop one for a more common disease? In the United States, one factor working in our favor to mitigate that problem is the FDA's Office of Orphan Products Development (OOPD). This program sponsors research on "orphan" (rare) diseases, provides grants and incentives for the development of drugs for their treatment, streamlines drug approvals, and coordinates between pharmaceutical companies, researchers, and other professional groups.

Other groups are working to our benefit too, including the National Institutes of Health's The Office of Rare Diseases (ORD), the National Organization for Rare Disorders (NORD), the Rare Diseases Clinical Research Network (RDCRN) and of course the Aplastic Anemia & MDS International Foundation (AA&MDSIF). Every chance we get, we should speak up for ourselves as individuals too.

[Zoe's Life]

Dick,

You forgot to add not enough blood cells. It really is the "Not Enough Disease."

Zoe

[Dick S]

Originally Posted by Zoe's Life

Dick,

You forgot to add not enough blood cells. It really is the "Not Enough Disease."

Zoe

Good one Zoe!