Fake-Democracy's Take On Health Care: They will not let you die, but they will not cure you either; pharmaceuticals need to continue making money.

 That our so-called Democracy does not work is something that I have long known; however, I could have never imagined the consequences would reach even the most critical aspects of our lives. During the last several years, I have been moving Heaven and Earth, trying hard to receive stem-cell treatment to clear the cornea opacities that have taken all my vision. All the eye-doctors I have consulted have always agreed stem-cells are my best option; but, shockingly enough, it would be impossible to get this done in the U.S.. As it turns out, national medical regulatory agencies such as the FDA in the U.S. or the EMA in Europe put health scientists through a diabolical ordeal, if they ever try to develop new therapies. For one thing - as a clinical-study research coordinator explained to me - it is outrageously expensive to conduct a clinical trial; not to mention get a therapy approved. You see, in our modern capitalistic world, if you have the money to pay for the license, you are safe, and if you do not have the money, you are not safe. Of course, there are special circumstances where we can make some exceptions. For instance, if the economy is crumbling down, we can always expedite within a few weeks a global license for the COVID vaccines. OK, if some folks then die from a thrombosis, we will just accept it as the cost we have to pay to maintain our standards of living. Besides, pharmaceuticals do not have any problem to make the investment, because they know that once they get the license for their products, it will all pay off multiple folds very quickly. The only issue is that, since no one can make business from selling the patient's own stem cells, it is a ruinous financial investment to develop a stem-cell therapy.       

Tragically enough, I experienced this in my own flesh. In 2018, I learned of a group of Spanish researchers at the Instituto Universitario de Oftalmobiología Aplicada (IOBA) in Valladolid (Spain), who had developed a stem-cell treatment against the limbal stem-cells defficiency I am afflicted with and is the main cause of my cornea's severe opacification. For quite some years Dr. Edward Holland at the Cincinnati Eye Institute and many other doctors afterwards have tried to solve this limbal defficiency with the transplantation of limbal stem-cells from living or dead donors. The problem with this technique is, however, that it requires strong and harmful immunosupressive medication, and even then the organism's antibodies frequently end up rejecting the transplant, leading  - in many cases - to catastrophic consequences for the patient's eye. In order to avoid this serious caveat, the IOBA researchers - instead of extracting the limbal stem cells from a donor - derived them from cultivated mesenchymal (non-embrionic) stem cells. Basically, by cultivating these (non-specialized) mesenchymal stem cells, they "learn", they specialize, to function as limbal stem cells. Following many years of research, they conducted all the necessary clinical studies. Excitingly, the results - published in a well-cited international journal article - confirmed the safety and efficacy of these transplants of limbal stem cells derived from mesenchymal stem-cells. The bad news for me, though, were the study Had already closed, and I was going to have to wait for them to get the global license before I could receive the treatment. Consequently, at that time, my only real options were a penetrating (full) corneal transplant or a penetrating corneal prosthesis. Both of them, however, had a rather grim prognosis. My limbal defficiency made me a bad candidate for a full cornea transplant, and I was warned of a real risk of ending up losing the entire eye within a few years. On the other hand, I had always been told by my eye-doctors, that a full corneal prosthesis was a last resort option: at first, I would experience a spectacular improvement in my eye-sight; but, in the long run, there was a significant risk I would end up losing all vision, as a consequence of an eventual infection, increase in intra-ocular-pressure or the outright rejection of the prosthesis. Indeed, prostheses are in general not a good solution. Their sale makes pharmaceuticals handsome profits; but, sensibly enough, as any medical doctor knows, our organism does not trust this kind of foreign bodies and is therefore likely to attack them. At the end of the day, both, penetrating corneal transplants and corneal prostheses, are very invasive procedures, of the kind that cause high degrees of imflammation, which in turn call for complications. In sharp contrast, stem-cells have wonderful anti-imflammatory properties and are overall much less invasive. It was a no-brainer: it only made sense to wait until this group of Spanish researchers would obtain the license from the Spanish Medicine Agency (AEMPS). At that time, ingenuously enough, I could not see any reason, why it would take long.

In late 2018, however, I received an email from the Spanish Association of Aniridia patients (AEA), with exciting news on a new corneal laminar implant. This was still a prosthesis, but not a full prosthesis. Rather it was only a laminar implant to be introduced in a pocket opened inside the patient's cornea. It would still cause significant imflammation; but it was not in any way as invasive and risky as a full corneal prosthesis. In fact, as it turned out, the results in a series of first clinical studies had been convincing enough that the device had already been licensed in Spain. If that would not be good enough, as I researched for further information, I found out that the pharmaceutical producing the prosthesis was now going to start the same series of clinical studies in the U.S., in order to likewise obtain the license from the FDA. At that time, I was in the U.S., as my marriage's drama was reaching its climax, so it only made sense to take advantage of the opportunity to participate in one of these trials.

I have always found it truly remarkable, how well I took the devastating disappointment the implant's failure represented. I was totally convinced I was going to see again. I remember how excited I was, traveling the day before to the eye-clinic. I was telling everybody along the way about it. I even posted on Facebook that I was finally coming back from the dark. Yet, after the procedure everything was still the same. I was told I needed to allow some time: as the imflammation would go down, I would start feeling an improvement. However, months passed and there was still no improvement. In fact, two months after the procedure, I was informed that the pharmaceutical had terminated the clinical study. Clearly, it was not a good symptom; something was going wrong.

Definitely, I did not know then, but what was going on was that my organism was indeed not trusting this thing that had been introduced inside my cornea. Eventually I came to learn that imflammation works as an alarm mechanism, requesting the attention and intervention of the organism's "defense forces". As it turned out, the imflammation was attracting the blood vessels into the cornea. Normally the blood vessels have to stay clear of the cornea, since the cornea is supposed to be transparent, whereas the blood is red and the scar tissue that will be produced is not transparent either. However, I guess the antibodies need some way to access ground zero. This 'neovascularization' process is the bogeyman of every patient afflicted of limbal stem-cells  defficiency and it was taking place right now in my cornea at an accelerated pace.

As a result of the progressing neovascularization of my cornea, over the following months thick scar tissue formed all around the KeraKlear implant, causing my cornea to opacify even further. It would, however, still be several months before I noticed any further deterioration of my vision. It was actually a long time before I could realize what had been going on. There had obviously been a reason why the pharmaceutical had terminated the clinical study. My doctor could tell what was coming; he could see how the blood vessels - attracted by the imflammation caused by the implant - were slowly penetrating into my cornea. He explained he thought it would be good to make a second intervention: he would like to try to remove some of the scar tissue, he could not get into on the first procedure. In reality he wanted to remove the implant, before it would cause more damage.

In a diabolical twist of fate, the new procedure was scheduled for March 2020. You will probably recognize the date. Yes, if there was anything that could go wrong, it was definitely going to go wrong. Indeed, March 2020 was when COVID finally reached the Western World and the lockdown was ordered. You will remember that, since no precautions had been taken until then, the health system collapsed and all "elective procedures" were cancelled, in order to save resources for COVID patients. I wonder what machiavellian mind came up with the term "elective procedure", as if it were an election to save one's eyesight. It all feels like someone was playing a sick prank on me; precisely as I learned that my procedure was being cancelled, I started all of a sudden to notice, that a patch was forming in my cornea and everything was getting dark. For goodness sake, everything was definitely against me. It was truly dramatic and utterly perturbing to realize that I was getting totally blind, noticing a decrease in my eyesight from one day to another,, and I could not do anything about it; I could not even go to an eye-doctor. By the time that a few months later I was finally able to hav the procedure performed, and the KeraKlear implant removed, it was simply too late.

  

  Since the corneal laminar implant had proven to be a fiasco, I had to reconsider back my options. Frustratingly enough, there had not been much progress on the licensing of the limbal stem-cells transplant therapy. Apparently, the Spanish Medicine Agency (AEMPS) still required a ridiculously detailed and comprehensive report with the application. You see, all the mandatory clinical studies may have been completed, and even a scientific article may already have been published in an international medical journal; but - when it comes to safety, these national regulatory agencies do not want to leave anything to chance. Well, at least so long the Economy is not on the line, that is. I guess for a big pharmaceutical the amount of work and money necessary to prepare this report is not a huge deal; but for a modest group of Spanish scientists it represented a herculian effort. Since it was becoming clear that it would take an awefully long time before the AEMPS would issue the license, I thought I would ask for an emergency authorization (or "compassion" authorization as they call it). The IOBA research group's leader explained to me that in the past they had already requested three other emergency authorizations, and the AEMPS had warned them against submiting any other application, regardless of the emergency of the specific case. However, if I wanted to request the emergency authorization myself, they would be happy to prepare the necessary medical report in support of my application. I was ready to do anything, so I contacted the AEMPS for information on how the process works, and, as soon as I received the report from the eye-doctors, I submitted all the required documentation. Afterwards, I even traveled a couple of times to AEMPS's headquarters to explain my special circumstances, but I was not allowed to speak with anybody. During the following months I wrote them another couple of times to check on the status of my request; but did not get any response either. Finally, four months after I had submitted my application, I was informed they had declined it because they needed my eye-doctor to submit it on my behalf. If that was the case, I could not understand, why they had not told me from the very beginning, but had instead waited four months; it was supposed to be an emergency, you know? Anyway, if that was the whole issue, I certainly did not have any problem to ask the group's leader to file the application on my behalf. I remember well she had told me, the AEMPS had warned them against requesting any new emergency authorization; but I made sure to copy AEMPS's response to me, explaining that this was exactly what they were supposed to do. As much as she feared waking up AEMPS's fury, she agreed to concede my request. Yet, a couple of weeks later, she wrote me again to let me know that, not only had the AEMPS declined, but - as she had been anticipating - they rebuked them for defying their directions. I considered for a while replying to AEMPS's letter to me, asking for a clarification on their contradictory instructions; but - as I worried there could be reprisals in the future, I finally decided to let it go; it definitely did not seem a good idea, if I wanted to keep any hope of ever getting any authorization.   

Instead, I thought I would follow a subtler strategy: I am a member of the Spanish Association of Aniridia patients (AEA), and it only made sense to ask them to advocate for me. In fact, this new limbal stem-cells transplant therapy is really critical for any Aniridia patient, since our limbal stem-cell deficiency is the main reason why our cornea gets increasingly opacified as we age, until we eventually become blind. In fact, it was really odd they had never informed about it. I believe it had been one of the secretaries who in 2018 Had told my mother, one day she call them for information; but they have never sent a message to all the members, as for example they had done to announce the infamous KeraKlear laminar implant. 

Anyway, fortunately enough, I happen to have personally known Rosa Sánchez de Veega (the founder and president of the AEA), since she founded the association in the mid 90's. Moreover, she had now founded and was presiding over the European aniridia Association; so it was only an excellent idea to write her and ask for information on these new stem-cell therapies. Oddily enough, she replied with an outdated review of all those traditional therapies, that eye-doctors caution against, such as penetrating cornea transplants and prostheses. Furthermore, she would enigmatically repeat over and over again she regreted there was not more information she could give me. All this, however, did not stop her from handing me one of her usual lectures on the need to increase my contribution to and degree of involvement with the association. You see, Rosa has always been of the belief that patients of Aniridia should not ask, what is that their association could do for them; but, they should instead ask themselves what is that they could do for the association. Not unlike most other people, her sales pitch has always been, that the more funds the Aniridia Association could collect, the more it would be able to promote research for aniridic patients. According to her ideology, aniridia patients should only trust the safety of those treatments, which have been specifically designed for aniridia patients. For example, she will eventually make the argument, according to which it was reasonable the AEMPS would not authorize me to receive a transplant of limbal stem-cells derived from mesenchymal stem-cells, if such therapy had not been first tested on a sufficient number of other aniridic patients. But, how do we then find the first aniridic patients to try with? Probably her answer to this question would go along her vision, according to which the role of her Aniridia Association was to organize scientific meetings and offer research grants and awards, aimed at the advancement in Aniridia research. In fact, in 2022 the AEA established an agreement with a group of doctors, who were working on a proprietary formula for serum tears against dry eyes. Although these doctors' clinical study had only been authorized by the AEMPS to test the efficacy against dry eyes, the AEA still promoted this new serum-tears formula among aniridic patients, for its potential to prevent the very pernicious neovascularization adult aniridic patients are genreally afflicted with. The sales pitch used by the AEA to encourage the participation in this clinical trial was that the regular price of this wonderful product was around 600 euros (slightly over 600U.S. dollars); whereas, "through this special deal", those who participated in the study would only have to pay 100€ to the association. Contrary to what Rosa argued to me in her emails of 2021, the AEA's argument for this 2022 AEA-managed clinical study was that we needed to trust our researchers and cooperate with all these scientific efforts. Obviously, in order for Science to advance in the understanding of our Aniridia, it was imperative that we participate in these clinical studies and try out these new treatments.

Yes, the line of argument employed by Rosa in her 2021 emails to me was as paradoxical as it was intriguing. On one hand she insisted she did not have more information than that outdated review on the traditional penetrating cornea transplants and protheses; but, on the other hand, she advised that only if I get fully involved and commited with the Aniridia associations, would I be in the know and at the cutting edge of the latest on Aniridia research and all the therapies that could help us. Right off the bat the whole argument did not make any sense and felt as insulting as indignating; but, perhaps, there was something more to it, than what I could have interpreted on a first thought. What I read was definitely so frustratingly unsatisfactory, that I thought I should persevere. It certainly felt very odd that she knew less than I did. When I read now my subsequent message, I marvel at how naive I was. I really opened my heart. I explained all that I had been going through over the previous several years: from the break-up with Alia, the loss of my eyesight during my second stay in South Africa, my ordeal trying to recover some eye-sight, the KeraKlear fiasco, and all my frustration over AEMPS's diabolical obstruction and all their "safety concerns" bullshit. What was all that they were supposedly so worried about? Really, they feared those stem cells were going to eat my eye-sight away? But, for goodness sake, I was already blind!! As much as I had little doubts that Rosa was not telling me everything she knew, but was actually keeping from me quite some of her information, I took the time to explain all what I have been able to find out, as if she would not be already perfectly aware of it. Needless to say, my focus was AEMPS's wicked obstruction to any stem-cell therapy. It was outrageous that all these national health regulatory agencies deny us the opportunity to, not only recover some vision, but even take proper care of our most basic health needs. It was an obscene hypocracy that, as they were not allowing us to benefit from these new less-invasive treatments, they were implicitly - but effectively - driving us and condemning us to the far more dangerous penetrating cornea transplants and protheses; not to mention the blatant harrassment to take the COVID vaccines, to which the entire population was at that time being subjected by mass-Media. Last but not least, I literally beg her - in her authority as the founder of the Spanish Aniridia Association (AEA) and president of the European Aniridia Association - to advocate for us and explain to the AEMPS, that, for our eyes' good health, we needed this well-tested stem-cell therapy against our limbal stem-cell deficiency, and, at the very least, those of us who requested it should be granted an emergency authorization. 

Rosa's reply could not have been more grotesquely disingenuous. She did clarify, of course she was most absolutely in the know on all those new stem-cell treatments and medical breakthroughs; but - irritatingly enough - she over and over again repeated her lecturing on the need to be patient and allow doctors the necessary time to finish their research, as if scientific research were not an neverending endeavor in pursuit of ever more accurate answers. She understood my anxiety and frustration - after all, we were all in the same boat, and we were all anxious for the final results of the ongoing research -; but I needed to comprehend that scientific research has its own timeframes and doctors advance in their study at a pace, that will never be as fast as patients wish. It goes without saying, that Rosa, all along her message, failed to acknowledge that, after many years of research, the IOBA group not only had three years earlier already completed all clinical studies, but in 2019 they had also published their results in an international journal paper., which has been cited by numerous other research groups from all over the world: "A proof-of-concept clinical trial using mesenchymal stem cells for the treatment of corneal epithelial stem cell deficiency", in Translational Research 2019, 206: 18–40. Obviously, neither did Rosa find any objection to national health regulatory agencies' grotesque double standards, subjecting stem-cell treatments to the most ridiculous scrutiny, while swiftly handing out the global license to the COVID vaccines, after only a couple of months of development, a few more months of clinical trials and one more month of application process.    

Evidently, it did not take the sharpest pencil in the drawer to figure out that I was not going to get any help from the Spanish Aniridia Association (AEA). However, since I am by far the most stubborn person on the face of the planet; believe it or not, I refused to give up and instead thought up another idea. OK, the AEA was hopeless, but why not give it a try to its American counterpart, the Aniridia Foundation International? The question actually was pretty stupid: namely, it is extremely difficult to have access to any stem-cell treatment in Spain; but in the U.S. is even worse, in the U.S. is basically impossible. When President George W. Bush imposed a bar on any embrionic stem-cell research, we thought it was for ethical reasons; but, given that several other (non-embrionic) stem-cell types have been found with much better properties, it is a long time that scientist have lost interest in embrionic stem-cells, and, yet, the obstacles to stem-cell treatments remain the same. If that would not be troubling enough, not unlike in Spain, associations of patients do not have any problem with that either: indeed, not only have I never received any information on stem-cell treatments from the Aniridia Foundation International, but neither did I receive an answer to my inquire.

Wether I liked it or not, I just needed to come to terms with the fact that I will have to sit and wait. Yet, at least I could take some solace in the existence of a path, as torturous as this was. Indeed, the IOBA folks had hinted me that, some months after they have finally submitted their application for the global license, it would be possible to request my emergency authorization. Thus, that is exactly what I did. Four months after they finally submitted the license application, I asked the IOBA research group's leader if at last the time was right to request the emergency authorization. They clearly had good information, because - as they had hinted - a few weeks were all what it took for them to make the request and receive a positive answer from the AEMPS. It makes one wonder, if safety concerns had been what for four years had prevented me from treat the cause of my blindness, what is that had changed all of a sudden?   

Apparently, they got two authorizations; fortunately, one was for me and another was for a girl, who had suffered a corneal perforation. I was excited, after so many years waiting, helplessly watching as everything around me was falling apart, I was finally going to be able to give a new turn back up to my life. It was easy to think of this transplant to the limbus region as the first step in a path, that would eventually take me back to my best days. I had reached rock bottom, but from here everything would nothing but get better. Definitely, everything needed to start with this transplant. I had to first resolve my limbal defficiency, before I could think of doing anything to recover my cornea's transparency. But, once I would have my vision back, I knew that nothing would stop me; sky would be the limit! Evidently, it was easy to be carried away by wishful thinking. In fact, the doctors were sure to make clear that this procedure would only address my limbal stem-cell defficiency; and I should not expect any significant improvement in my vision; if anything, only a little. Still, it was really hard to resist the temptation to wishful think, that in order to avoid any eventual disappointment, any sensible surgeon would always want to stand clear from making any promises. Obviously, at this point, it was not like I needed anybody to convince me of taking the step. This did not mean, however, I was blindly going for it. If I can be criticized for something, it would be because I sometimes ponder things too much. In fact, as certain as I was to have the procedure performed, it seemed to me only sensible to ask if any aniridic patient had previously receive this transplant of limbal stem cells derived from mesenchymal stem cells. Given what Rosa Sánchez de Vega had told me, I predicted the answer would be a resounding 'No'; but what was my surprise when I learned that they had previously performed this procedure on two female patients of Aniridia. If that was the case, I obviously wanted to ask how the experience had gone. I knew well that all those freakingly annoying privacy protection laws would not allow the doctors to release any kind of identifying information of these patients; but I could instead simply ask my doctor to provide them with my contact information. Surprisingly, my doctor explained that she knew well that one of the two women would not want to share her experience, but she would ask the other one. Some days later, she wrote me again to tell me that the second woman did not want to talk about it either. Apparently, it had been some sort of traumatic experience and did not like to go back over it. The word 'traumatic' cause me some alarm; it made me worry that, perhaps, contrary to what I had assumed, it had not gone well. I so thought to write back my doctor and ask about it. She did not hesitate to clarify, it had certainly had gone well and the outcome had been completely positive. However, "you know", medical procedures are never particularly enjoyable experiences, and this patient simply wanted to put it behind and not think about it anymore. It all still seemed really odd to me. It is definitely rare the case that someone goes through a successful experience, and does not want to share it with other mates confronting the same dilemma he or she had in the past. Given that the Spanish Association of Aniridia patients (AEA) has never informed its members about this stem-cell treatment, and Rosa told me what kind of great friends she was with the IOBA research group's leader, I wonder who were these two female patients of Aniridia that were in the know of these clinical studies and enjoyed the opportunity to receive this very important treatment against the increasing opacification of aniridic corneas...     

        

After four years waiting, I was finally able to receive treatment for my limbal stem-cell defficiency. Most stunning of all was how incredibly simple the procedure was. The mesenchymal stem cells had been cultivating on a membrane for the previous month, until they eventually derived into limbal stem cells. Now, all what was left was to stitch the membrane onto the outer surface of the annular region around the cornea, so that the stem cells would fall into, and could be absorbed by, this 'limbus region'. The procedure did not even require full local anesthesia, but some mild sedation sufficed. Not only could I follow the instructions and explanations the surgeon was giving to the nurses; but I could even feel the stitches. I could not believe anybody could have ever alleged safety concerns to bar me from receiving this treatment. What is that they fear? Did They think I could die? Did they worry I could get blind? Or, perhaps, it is something completely different...?

Not only was the procedure incredibly simple; but - wishful thinkings aside - the results could not have been better. Within a few weeks a healthy protective epithelium grew at the outer layer of my cornea. Since it is the limbal stem-cells which produce these epithelial cells, it was evident that the stem cells had got to work right away. Another crucial function of limbal stem cells is to deter the blood vessels from penetrating the cornia and, wonderfully enough, further confirmation that the new limbal stem cells were doing their work came over the following months as my cornea's neovascularization decreased significantly. Since I received the stem-cells transplant, I have visited numerous top-notch eye-clinics in Spain and the United States, and all the ophthalmologists have agreed there has been an improvement "from night to day". Indeed, the pictures speak for themselves. I just cannot believe that for four years I was not allowed by the health authorities to take proper care of my eyes.      

As expected, the reduction of my cornea's neovascularization allowed for a little improvement of my eye-sight. However, as fantastic as these limbal stem cells are, they do not do magic. A thick layer of scar tissue had formed in the past in the very centar of my cornea, and the new limbal stem cells were not going to miraculously make it disappear. For that purpose, a different type of stem cells, specific of the corneal stroma region, were necessary. Fortunately, there were good news on that front as well. During the previous years I had been researching online, looking for scientific papers on the question, writing to authors, and had found there had also been a lot of work and some fantastic advances in the restoration of the transparency of the main body of the cornea (corneal stroma). In fact, one group led by another Spanish ophthalmologist had already successfully completed a series of clinical studies on this specific topic. Oddily enough, they had to travel to Libanon to conduct these studies; for, in the Western fake-democratic world, our old friends of the national health regulatory agencies would not allow them. Back in 2021, I had written to some of the researchers, and one of them was kind enough to set me up an appointment with the group's leader. Much to my disappointment, however, at that time, he considered it was to no avail to introduce any stem cells inside my cornea, since my cornea's profuse neovascularization and the little protection my degraded epithelium provided would quickly lead my cornea to opacify again. Yet, with these two caveats addressed by the recent limbal stem-cells transplant, I had some hope the new verdict would be different. Hence, I traveled to Alicante in Southeastern Spain for another visit, and what was my joy, when he told me he thought it would work now.. Lamentably, it was not long before I got the bad news. Indeed, just a few days later, someone called me to inform me that the terms of the clinical study excluded my participation. After all, it had been good that, back in Alicante, right after coming out from my consultation with the ophthalmologist, his staff had already pointed out that caveat. I was not going to give up that easily, though. I therefore sat down and took a few days to write the best letter I could craft, suggesting we requested an emergency authorization, so that I would still be able to receive the treatment. I erupted in jubilation when I read his reply. Not only did he agree, but he even seemed optimistic about the chances of obtaining the authorization within a reasonable time. I was definitely fearing I would have to wait again several years before the freaking AEMPS would allow me to finally recover my eye-sight. At least, this time I knew (or so I thought) what is that I needed to do. I so again sat down to write another letter; this time to the Spanish Aniridia Association (AEA). In fact, it had only been some months that they had organized and promoted the aforementioned clinical study on the efficacy of a proprietary formula of serum tears. Thus, I only had to repeat their own arguments: "we needed to trust our researchers and cooperate with all these scientific efforts. Obviously, in order for Science to advance in the understanding of our Aniridia, it was imperative that we participate in these clinical studies and try out these new treatments"            

Much to my disappointment, not only the board of directors did never even tried to contact the AEMPS to advocate for me, but they never even bother to reply to my letter. If they disagreed with my reasoning, at least, if only for respect to a paid member, they could have given an explanation as of why they thought differently. Still, since I never give up, six months later I took the time to write then another letter. This time, however, I also sent a WhatsApp message to the AEA's president. Ironically enough, I had her contact from when she called me to promote the proprietary serum tears clinical study. It actually took two messages, but eventually she wrote me a short reply: she informed me that she no longer served as the president of the AEA, but I should rest assured that somebody from the AEA's board of directors would respond to my letter. You know, when they tell you to "rest assured", that is the time that you really need to freak out. Indeed, I have never ever received any response to my letters.

Never mind, in December 2023, the AEA sent a message to all its members, informing that the AEA's board of directors' term would expire in April 2024, and therefore elections would have to be held. They encouraged new people to take the step forward, contribute and get involved with the government of the AEA, because the current members of the board of directors were going to step down. Allegedly they were exhausted, they had dedicated a lot of time and energies to our beloved AEA, and it was time they would go on with their lives. Good riddance to bad rubbish! Absolutely!, those were excellent news: If they were leaving and someone new was now required, I was going to be more than happy to step forward and do the service they had never wanted to do: Yes, the Spanish Medicine Agency (AEMPS) was finally going to have to explain why they were systematically obstructing the development of stem cell treatments. All what I needed to do is to run in the upcoming elections, and, since nobody is interested in the AEA farse, I would not find any opposition to become a member of the board of directors.          

In fact, as it would soon be confirmed, the concern was if there would be enough people for the bare minimum of five members of the board. However, the real problem, what fire all the alarms, was when it became known that I intended to run. Then, they started moving heaven and earth, looking for people, who would be willing to run against me. However, nobody is foolish enough to buy into Rosa's ideology, according to which the patients should not ask what is that the AEA could do for us, but what is that the patients could do for the AEA. Consequently, they could not find anybody ready to run for the four high-responsibility positions requiring a significant time-commitment, and the incumbent members of the board had to revert their decision to leave. Considering that folks are usually not given to drastic changes, I do not think they could fear they might not be re-elected; but - as it turns out - the matter was serious enough, that they went as far as rigging the elections, in order to ensure I get excluded from the board. I guess like in most other associations of patients, adult members do not waste their time with the AEA, because they know that their association will never do anything for them. Since the AEA's concern is only to collecd funds, their only objective is to show how much they care for children with Aniridia. After all, nobody would imagine that - as any patient of Aniridia could tell you - children with Aniridia enjoy the happiest of lives, since everybody loves and cares for you. It is only as we mature and our eye-sight gets ever worse, that we really need help. After all what the AEA's current board of directors had pampered the families with children affected of Aniridia, in order to fix their re-election all what they had to do is to ensure that only the parents of those childrens could vote. Indeed, the families were invited to spend a all-free weekend in a exclusive campground in beautiful Guadarrama National Park. Lodging, meals and recreational activities were all paid by the AEA. You do not need me to tell you that, now that  these lovely folks - the AEA's board of directors' close circle of friends - were all assembled for such a wonderful occasion, it was the perfect opportunity to celebrate the elections. As of the other 90% of AEA's members - the adult patients of Aniridia - I was the only one to be able to cast a vote. Indeed, the AEA did not accept vote-by-mail, nor any other form of remote voting. Rather, in order to be able to vote, the AEA required all these severely-visually impaired adults to go through the ordeal of traveling by public transportation (since Aniridia patients do not see enough to be able to drive) to the campground site of the assembly, to which there is not even public transportation. The only option the AEA allowed to these adult patients, who could not attend the assembly in person, was to delegate their votes to some other member who could. However, even then it was impossible to give the delegate any instruction on what way the vote should go, since the AEA only announce who was running for election to those attending the assembly, 10 minutes before the voting started. As much as I have gone through in my life, the assembly was one of the most disturbing experiences: I only wanted to fight for the Aniridia patients, I was only asking to be allowed to request that the AEMPS would give permission to Aniridia patients to receive the safest and most effective medical treatments for their eyes, I was not going to get any kind of material compensation for my time and efforts, and, yet, the 20 - 30 hooligans gathered at the AEA assembly, all parents of children with Aniridia, said in no uncertain terms: "No!". As terrible as it sounds, their only concern was that every year they get to enjoy a free weekend at some beautiful vacation resort. The experience was so relevant and revealing that I thought I should write it up:

http://www.celulasmadreparatodos.org

   

To make a long story short and as a way of conclusion, as you have by now probably guessed, I never got the authorization to receive corneal-stroma stem-cells to clear the opacities in my cornea, neither did the IOBA research group ever receive from the Spanish Medicine Agency the license to freely perform their limbal stem-cells transplant on anybody who needs it, nor to this day has the Spanish Aniridia Association ever informed to all its members of the existence of said limbal stem-cells transplants against Aniridia patients' very-pernicious limbal deficiency.

   

 I was recently speaking with an Albanese doctor I have been visiting for quite some years now. Several months ago I read a scientific paper from an ophthalmologist in Albania on a clinical study on the kind of corneal-stroma stem-cell application that I require to clear the opacities in my cornea. I was most absolutely ready to travel to Albania, but the conditions of the study stated participation was "by invitation". Intriguingly enough, there was no indication on what it takes to receive one such "invitation". As much as I doubted that my Albanese doctor friend would help me, I thought it could not hurt to try. Thus, last time I visited his office, I asked him if perhaps, he would care to write some sort of letter of recommendation to his peer in Albania, explaining what kind of a nice fellow I was and how badly I needed to receive such a corneal stroma stem-cell treatment. As I had expected, he kept giving me evasive responses, He only insisted that is not how things work; but then never clarified how else is that things actually work and how I might otherwise be able to be invited. Probably driven by the feeling of helpnessness it cause me to realize, that once again I would miss out on this new chance to restore the transparency of my cornea and recover my vision, I thought for a second how awesome it would be to be a medical doctor: not only are they in the know of what are the most effective therapies to treat any health disorder; but they also have the most privilege information on how to get access to such therapies However, then I remembered the IOBA researchers and returned to the reality that medical doctors are cogs in the machine as well.  . Certainly, it is most monstrous that the System keeps the immense majority of the people from correctly treating their illnesses, and instead induce them to follow therapies that are known will only make their health problems even worse; but that does not change the fact that what the IOBA researchers (and many, many other scientists all around the globe in countless fields as well) have been and continue being put through is most absolutely unacceptable. The IOBA researchers spent many years working on a therapy that would significantly improve the lives of many folks like myself. Not only did they invest a lot of money; but they set all their dreams to such achievement, dedicating endless hours and energies. Not only did they give the best of themselves; but they actually made it. Yet, here are the evil health regulatory agencies to kill it all altogether. I cannot conceive how anyone would submit to such inhumanity, and not revolt. I would think, at the very least, the System would have to allow scientist to make a change in people's lives by invitation.  

 We live in a truly terrifying world: There are therapies, which could cure and immensely improve the lives of the people and, yet, the fake-Democracy system restricts them for the exclusive benefit of the privilege minority, who is somehow able to get an invitation. If somebody had told me some years ago, there is no way I had believed it. I would have said it is a lunatic conspiracy theory. I think no one is ready to believe any story of this sort can be true; it is just too painful to accept, no one could live thinking that human beings are like that. We just keep missing it is actually the System; we just have to understand we created a monster.