I have been speaking with a really lovely doctor from Spain.  His name is Dr. Ignacio Blanco.  He is an Internist and Pneumologist and his specialty of research is in Fibromyalgia.

Dr. Blanco just recently problished a groundbreaking article on the Abnormal Overexpression of Mastocytes in Skin Biopsies of Fibromyalgia Patients.  This is an article that some patients believe connects mastocytosis and fibromyalgia.  I'm not raising this to discuss this possibility, but the reason why I'm raising this article is to say that the world of research into mast cells has been given a huge blow in the the FORCED RETIREMENT of this doctor and two of his fellow scientists!!!

We know that within the study of mast cells we have researchers who have dedicated their lives to studying mastocytosis in order to discover not only how the disease itself works, but also how the mast cell works.  It is due to their groundbreaking discoveries that other scientists have become interested in the mast cell and have begun studying it in regards to other diseases.  The Mastocytosis researchers concentrate their efforts still within the realm of only diagnosis and so much about the disease and how it affects our bodies is poorly understood.  It is the work of other doctors, like Dr. Blanco, which begins to shed light as to the mast cell's role in other disease processes.   The more this is understood, the more our researchers can comprehend as to the mast cells role in masto and our other areas of the body!  

The loss of this particular doctor is huge for there are perhaps only a HANDFUL of pneumologists in the world who understand and study the mast cell!!  So very little is understood as to the role of the mast cell within the lungs for mastocytosis so very rarely occurs within the lungs and this is why it's not been studied!  But even then, mastocytosis of any tissue outside of the skin and the bone marrow is very poorly studied and there are patients out there who have real issues with their breathing and other body functions due to the lack of study of the mast cell's role in other tissues and other diseases!!!

So, why is he and his colleagues being forced to retire.  Because Spain is forcing anyone over the age of 65 to retire, period, due to their high rate of unemployment!  Yet, doctors, especially researchers are in a profession in which these people are finally in their prime around this age!  These people traditionally get into the market place at an older age due to all the study they must go through in order to practice medicine.  Yet, for many years, doctors are still learning and it takes them years of study and personal investment and work to come to a place of mastering a certain area of study and it is only by the time that they reach their mid to late 50s that they are real authorities in any subject and to force these people to retire by the time they are 65 is a TRUE LOSS TO THE MEDICAL COMMUNITY!!   This doctor has taken a real interest in the mast cell and it's function within fibromyalgia as well as the lung and has been forced as of December to STOP EVERYTHING!!!


THIS IS JUS UNACCEPTABLE!!!   For not only does this cut short the hopes for fibromyalgia patients, but it also cuts our own hopes short for finding answers and understanding of how mast cells work in this specific disease of which some of us are known to suffer, but also as to the mast cells function within the lung!  I have been looking here in Brazil for a pneumologist who knows mast cells and I have been unable to find a single one!  To lose this man in the prime of his career, and the point where he is just beginning to shed light upon this area is a TRAVESTY!!!

But what can we do?  

If you are as upset about this as I am, I think that it's necessary to write a letter to the American Consul in Spain protesting this decision to retire doctors and especially scientists due to their age, especially when they are active in the field of research!  This forced retirement affects the entire medical community around the world and not just within our own particular countries, for research, today, is international and we ALL profit from it one way or another!

So please consider writing to the US Embassy in Madrid.  This is their website:   http://madrid.usembassy.gov/


The Ambassador's name is Ambassador Alan Solomont and his wife, who is also very active, her name is Susan.

Mr. Solomont's background is in health care and is a graduate from Tufts University which is where Dr. Theoharides is from.  This man may be able to help persuade Spain for the need to change it's recent laws to allow for an exception of scientists who are over the required retirement age to return to their work.  This is what we want to ask be done in the case of Dr. Ignacio Blanco and his fellow colleagues!!

I would ask that you would please consider writing a strong letter to Ambassador Solomont.  We need Dr. Blanco and his colleagues to return to their work for younger doctors can not pick up where he has left off - it would take YEARS for them to catch up!!!

Thank you!

Lisa

Contact information for the US Embassy in Madrid, Spain.

U.S. Embassy in Madrid, Spain
Serrano 75
28006
Phone: 91587-2200
Fax: 91-587-2303
Web Site: http://www.embusa.es/
Email: amemb@embusa.es
Office Hours: Mon - Fri 0900 - 1300




Below is the abstract of the recent work by Dr. Blanco and colleagues.  If anyone is interested, please PM me with your email address and I will gladly send it to you.

http://www.ncbi.nlm.nih.gov/pubmed/20428906

Yes, Joan it IS awful!   I've been talking more with Dr. Blanco and another doctor, Dr. Shane Fitch, who is the president of the A1 AD association in Spain.  He is their major authority on this disease and he's been TOTALLY taken out of commission!  They lost their biggest and best researcher and authority!  Can you imagine?!   Yet, Dr. Blanco has done this incredible research on fibromyalgia and that was groundbreaking research for up to now they've not been able to PROVE it's pathological cause!  He's begun taking a MAJOR interest in mast cell research so that means that there are THREE areas that are affected by his removal and that of two others of his team - all forcebly retired.

But this is only the tip of the iceberg!  Spain set a precident in retiring medical researchers and being a socialized medicine, it's the first country to do this.  Greece and Ireland are in worse trouble and they will most likely follow suit!  If nobody stands up to voice concerns about the devastation this will cause with medical research going on in Europe, these two other countries will likely do the very same thing!  And when you consider the OTHER countries like Germany and France and England, you are talking about WIDESPREAD retirement of many of the best medical researchers IN THE WORLD!  

This situation isn't just about masto, but that of generalize medical research and being that the smaller, more rare patient groups and their diseases are likely to suffer the most, it means that there will be HUGE setbacks in research!  This means that those diseases with the most $$$$ backing that research is what is going to get the most attention!  Well, we all know which diseases those are and which they are not!  We rare patient groups are going to suffer major repercussions due to this!!!  Why?  Because doctors rely upon one anothers findings to base their own work!  It's a stepping stone process and without other stones to add to this we take huge steps back and loose a LOT of progress!!

This concern of mine isn't just about losing one or two researchers in mast cells, but that of having the majority of medical research around the world come to a screeching halt and it may take a decade or more to recover from it!!!  It may also make it so that any government researcher under the age of 65 may not want to invest his life doing research that will come to now reward for his own career.  It's very likely that all government funded research will go without researchers to do it for what doctor in his right mind will want to if he can't finish his work and get the credit for it?  This will put a huge damper on these researchers and they'll turn into the typical government worker doing a mediocre job, filling time.  The major incentive for the government researchers is the possibility to make a name for themselves, for they have no other incentive than that!  Think about Dr. Metcalfe when you consider this situation.  He's a government employee!  His income is fixed as a government employee.  If he was under the threat of being forcibly retired at 65, do you think he'd push for answers for the love of the research?  NO WAY he would not!

I've been talking with Dr. Fitch about my concerns.  She has tried all last year to get the Spanish government to change their views on this unsuccessfully.  She's still trying and said that she got things ruffled when she began getting international pressure placed upon this.  I've suggested to her that if we could gather together patients from not just masto groups, but also other fibromyalgia groups this may help, but I've also told her that this is not just the situation facing Dr. Blanco, but this is a much larger threat and that there's a need for also gathering the input of the other international researchers here.  It's a question of the doctors as well as we patients standing up and making an outcry about this!  We must protect our own interests, but if we all don't at least say something, I honestly fear that this will spread.

I know that many of us American patients don't quite comprehend the impact going on here, but I do because I live in a country where the great majority of doctors work in both the private and public sector.  I've had to deal with both groups as a patient.  And here in Brazil we don't have any research  going on in MCs or in mastocytosis and the result of this is a total ignorance by the medical community as to not only mastocytosis but also to MCs and how they function!  The impact is tremendous and if we patients don't make a stand, and general outcry about this, it's very possible that this will become a wave that spreads across Europe and Canada even and this could possible even effect the US.  The NIH funds a great many research projects!  Can you see the government deciding to make major cutbacks in these areas?!   Masto will be one of the first to go, I can promise you!   Aides will be one of the last!  Why?  Because Hollywood knows how to take advantage of their money and the media!

This is really a serious situation and a MAJOR THREAT to all of us and we MUST do something NOW while the situation is small and workable!!  We patients have an obligation to stand up and try to turn this situation around while it is ONLY IN SPAIN, before the other countries begin doing the same thing!!


As to what to do, Dr. Fitch and I are talking this over, but since she lives in Spain and understands the government better, I think that it's best for her to devise a game plan.  My thought of writing to our Ambassadors may be good, but she may know of a more effective means of dealing with this.  If you could write something up, but hold on to it for right now, I'll get back to everybody here and let you know what she's devised.  

Just so everybody knows, I'm not a political activist and I personally hate politics.  But there is a time when like it or not I've got to pull my head out of the sand and I feel that this is one that must be given attention.  I'm just not willing to turn my head on this one, that's all.

Thanks Joanie!   I'll get back to you!

Lisa

Thanks Mona!

When I wrote this on Monday, I was thinking mainly about Dr. Blanco and the loss that he and his colleagues would mean to scientific research as a whole.  Since then, and since I've been speaking with Dr. Fitch regarding this situation my concerns have matured.

The issue here isn't merely the fate of one researcher being forced to retire before he's ready and in the middle of his work.  The real issues is much, much bigger, for he represents what very possibly could happen throughout Europe!  Spain has socialized medicine as does the majority of the European countries and many other countries around the world.  Spain isn't the first country in financial trouble, but they are the first (that I'm aware of) to pass this mandatory retirement law.  Their president is 50 years old and he's not personally touched by this law!  Yet, he's passed this flat out rule and the doctors and researchers have not been considered, nor the loss they are to society - it's a flat out deal!

Spain has set a precedent!  My concerns is that other countries are going to follow suit!  Ireland and Greece are in equal trouble!  Can you imagine the loss of Dr. Theoharides and his work?!  Dr. Castells is also Spanish, can you imagine what we would do without her?  And Dr. Akin is also European, what about him?   These three doctors obviously are not threatened, but what if they were in Dr. Blanco's position, working in the public sector of their countries?!!   Mastocytosis and Mast Cell Research would be horrendously threatened!  And when you look at the likes of the other researchers out there, the great majority of them ARE EUROPEAN!  The major researchers in the US are Schwartz, Metcalfe, Butterfield and a few others, but all the rest are European!!  How many of them are also public employees?   And, if things get down to it, Dr. Metcalfe is a public employee!!   His job and work is just as threatened!!  Can you imagine Obama, a man who would not be threatened by this law, doing this too?!!

Granted, drastic situations require drastic measures, but to include DOCTORS and RESEARCHERS as well?!    This is the ONE sector which should not be included in this kind of law!  They should be only asked to retire early if they choose to, but not required for there are not enough doctors as it is, and due to the cost versus benefit of  studying so many years and accruing large debts due to the cost of studying medicine, many of the youth are no longer considering medicine as a career option!  It's losing its glamor and fewer students are considering medicine as a career and we are thus losing doctors over time and the lack of them will only increase not diminish!  We need all the doctors and medical researchers we can use, not get rid of any, especially when they WANT TO WORK!

Yet, this is not a situation for only a few patients, but there is a need for the international medical community to also raise the outcry on this!!!  Their work is seriously threatened as well because they all use each other's work to learn from and to build their own understanding for their own work!  

Yet, the major people affected in this is NOT the doctors in their individual countries, nor the researchers doing their work, BUT WE PATIENTS!!!!!    WE who are suffering and praying for answers and treatment and HELP!!!    WE ARE THE ONES WHO ULTIMATELY PAY THE PRICE FOR OUR GOVERNMENTS' AND THEIR DECISIONS IN REGARDS TO DOCTORS AND RESEARCH!


This is why I'm so upset by this move by Spain.  It can start a domino effect and it is ultimately US, worldwide, who are going to suffer the consequences!   We patients MUST raise our voices and try to stop this in the very beginning before other countries do the same without considering the heavy consequences that this will create within the health sector!!

I'm not a political activist and I honestly detest politics and everything involved in it.  But this is one situation where I think I've judged it correctly and think my concerns are well founded and where I feel that it's important to stand up and say something!  

Thanks for standing up with me

Lisa

BTW - I'm talking with Dr. Fitch and since she is the person who has decided to stand up in Spain about this, I'm waiting upon her instructions as to how we patients might be able to voice ourselves in a more effective manner.    I'll pass on the information when I've got it
 

I really hope a solution is found for the situation and all will be good. I worry about these type of situations though. This is very similar to what is happening in the US and in other countries too. This is the ugly side of govt healthcare. I have always sided with private healthcare with govt supported options. Some people might think it sounds heartless but this exact situation I was afraid of. I know nurses who left Canada to work in the US cause we pay more and they dont get told where to work. Doctors left Canada too, now they send their citizens here for care because the waiting list for surgeries is horrendous.

During the Clinton administration, the govt forced pharmaceutical companies to sell vaccines at much lower prices. It sounds wonderful in application but the result was, most of them dropped their vaccine programs, no profit in it. It went from 12 companies that produced them to about 3. The result was, we now buy most of our vaccines from European companies. Nothing comes without a price, even when it is for the good of people.

I have read Obamas view on healthcare before the current law was passed, before he was elected. He does have the viewpoint that age should affect which patient is offered which health services, basically saying older people are not that productive.  I worry that future laws dealing with healthcare will affect us like this situation in Spain is now.

So here I am, living on a govt healthcare program, not making it if I didnt.. but knowing that companies who cant make a profit will close their doors to research and production if  there is too much interference in that area, also knowing that some of the most brilliant minds in medicine will opt out for work in other areas... or move to other countries. I dont know the answer.
Ramona

I agree with you 100%. "They" say they care about rare diseases, that theu will help. I seriously question whether that is merely talk because I have seen no action. They passed a law to make medicines for rare diseases easier to get and pass FDA in the US. The result?? I still have to go to Canadian websites if I want to buy Ketotifen... I dont see a difference.

I absolutely agree with you about making a stand and watching what they do carefully. I wish, I knew what to do after that
Ramona

This is Shane's letter to me.

date      Sun, Feb 13, 2011 at 3:40 PM
subject      Re: campaign blanco 2011
hide details 3:40 PM (3 hours ago)
Dear Lisa:

I wondered if you could write in some of your comments about the importance of Dr Blanco's research to the Spanish -speaking community.
You can publish directly in the English Blog address that I sent you.

Please try and be brief and I can then also translate this text  into Spanish and publish on our web, Facebook etc  and also send copies to the relevant Health Authorites.


This could be a starting point for us. Please also mention that you had written to the N American ambassador for Spain.
Do you have a Facebook page, or any other social network access point on the internet? Do you belong to any particular  patient support group?This would be useful.

Thanks

Shane

THIS IS TERRIFIC MONA!!   YOU'RE GREAT!!!


As to writing to the patient site that Shane asked me to do so, I didn't put that information here.   I don't know if she's wanting all of us to invade that site, but asked that I do so to help raise awareness with the patients there as to the bigger picture of all of this.

However, there are many patient websites we need to reach, too many for me to attempt!  Fibromyalgia is a much bigger patient group and I would suggest that if you're wanting to write to some of those patients, please do so!  Approach the forum owner and write to this person and ask them if you may say something as to the awareness of this situation.  Also, you could also consider writing to research forums in order to make the researchers themselves aware of this situation since it affects them more directly.   I wrote to a European mast cell and basophil research site and sent a letter to the head doctors telling them of my concerns.  

Will this help?  I don't know, but at least we tried!

Thanks for these emails and information!   I found out that the information I posted here as to the amercian embassy isn't corect - the email bounced back at me.!   I'm resending it using yours!   Thanks!

YES!!!!    DENISE TO THE RESCUE!!!   WHY DIDN'T I THINK OF THIS?!!  


BRAIN DEAD!!!  NOT BRAIN FOG - JUST PLAIN BRAIN DEAD!!