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    • #17969
      Paul met Debbie
      Participant

      In Boston a hospital took a 31 year old man off the transplantation list for a heart transplant, mainly because he refused to get a covid vaccination. The patient objected to vaccination prior to transplant because he was afraid to get cardiac inflammation, a known side effect of the vaccination.

      Earlier, a woman in Colorado was refused a kidney transplant because she did not want to be vaccinated against covid for religious reasons. Her Christian faith prohibited her to get a vaccine, because in the development of some of these vaccines tissue from cell lines was used from fetal origin, coming from abortions.

      The hospitals have defended their decision by stating, that transplant recipients have a higher risk of dying from covid (about 20% higher), and they want to do everything to prevent scarce donor organs to be used in patients with non-optimal survival rates. Furthermore, they stated that vaccination before the operation was much more effective to induce a strong immune response against covid than after, again because of the medication to suppress the immune system after transplant.

      I can see many good reasons to advise patients to take care of their body in the most optimal way if they are going to have a transplant. After all indeed, we wish these people the best possible chances to have a long and healthy life with these new organs. We should advise people to stop smoking if they get a lung transplant, or to stop drinking in case of a liver transplant. Or to get all sorts of common vaccinations to prevent other diseases, including covid. This is common practice and I see no harm in that. Because we should advise anybody to stop smoking and drinking and take care of their health well. There is nothing special in the situation of being a patient in need of medical assistance, that would allow us to do more than advise them. Perhaps even we should be more careful to putting these patients under the duress of extra advise, because they are in a dependent position and we should handle them with more regards and care.

      But in none of these cases patients are obliged to follow these advises. And there is no way – fortunately – to force them to. Medical procedures under duress or force are only allowed in the rarest of cases, if people are not compos mentis, or if they are a clear and present danger to themselves, or if they have been acting in a criminal way (for instance a blood test for alcohol after causing a car accident). There always needs to be a legal basis for this. Because this would otherwise violate their constitutional rights. And I think that denying medical procedures should only be possible under the same, severe and extreme conditions and under the same protection of the law.

      Denying people who are otherwise eligible for transplant surgery this option, if they chose not to be vaccinated, comes down to violating their freedom to decide how they chose to handle their health and bodily integrity in the way they see fit. It is very close to applying bodily force to them, and I don’t think there is a base for this in the law in cases like these so far. I urge those patients to take their case to the court and for patient organisations to pay for their expenses. I expect clear and prohibitive decisions from judges about this.

      These people are not criminals. They pose no risk for themselves or others that is greater than other people are free to do in other situations. They are consenting adults that make an informed decision about their own body. That should be respected at all times, even in times of covid.

      And it makes no sense practically speaking either. Even if these patients would, for the sake of being transplanted, agree to a vaccination, there is no way to force them to repeat vaccinations after the surgery either. Like there is no way to prevent a liver transplant recipient to start or keep drinking. Or a lung transplant patient from smoking.

      We don’t force other patients to change their lifestyles, including habits in eating and drinking, moving, dangerous or unhealthy hobbies or occupations etcetera if they apply for a medical procedure. We can advise them and educate them. But in the end, there it stops. And rightly so. The mere fact that their behavior might increase the risk after the medical procedure that they might die earlier than other patients that follow a “perfect” lifestyle, was never a valid reason to withhold medical assistance to those who are in need of that. Who is to determine what this “perfect” lifestyle or behavior looks like anyway? Where are the objective criteria for that? Where are the laws that describe these and provide for a careful balance of interest, and for the rights to appeal to decisions that are taken that way? And when did the medical authorities get the right to enforce those self-made criteria by withholding urgent medical assistance?

      And in a few years covid is like the flu, vaccines will only be 40% effective like flu vaccines are currently. There will not be just one prevailing mutation but a cocktail of different variants of different strains whose emergence has to be predicted quite unreliably, just like we do nowadays with the flues that go around each season. And no one in their right mind would deny patients any medical procedure for the mere reason that they didn’t get a flu vaccine. Already now it is becoming more clear every day that vaccination is not the solution.
      Only a year ago science told us that vaccines would give 95% protection and would end the pandemic. And politicians worldwide followed this prediction. And now, after delta and omicron and omicron+ , after two base shots and one or two booster shots, infections are soaring higher than ever and we are waiting again for the newest vaccines to solve this? If we don’t change our ways of living we will lose more ground to the virus every day and medical solutions will disappear on the horizon soon. Should we then discriminate these poor patients that are in need for a transplant right now, in stead of in a couple of years? I call this diachrone discrimination.

      This is the thin end of the wedge in my opinion. Are we creating a society where only patients that follow a perfect lifestyle are eligible for medical care or protection under the law? Is this what we really want? I think this policy is both unethical and unlawful. And even if in future, governments would create a legal basis for this, it would still be unethical lawmaking. There are some precedents of this in human history and they are very ugly indeed. We still remember the victims of these mistakes.

      We are entering a situation where those who do nothing to prevent infection except getting a vaccination are getting a free pass, whilst those doing everything to prevent infection (eating and living healthy, wearing masks, social distancing) except getting a vaccination are more and more pushed out of their civil rights and freedoms. This is indeed very sad.

      What are your thoughts?

    • #17971
      William
      Participant

      Just get the dang vaccine.

    • #17973
      Jenny Livingston
      Keymaster

      Paul, this is something I’ve seen a lot of discourse about as of late. I’ve refrained from taking part in these discussions because I’m not quite sure yet how I feel about it all. I can see both sides of the argument here, to be honest. Most of the talk I’ve seen is coming from the post-transplant CF community and many of them have said things like, “I had to get other vaccines and undergo rigorous testing to be listed; this is no different.” Along with required vaccines, there are lifestyle behaviors that are required or prohibited in order to be approved for transplant. As you mentioned, there isn’t a way to ensure that a patient continues to do those things (or not do them) after transplant, but they are required beforehand. Is an additional vaccine as a pre-transplant requirement any different than the other criteria that must be met? Should it be different for those who were already listed before the COVID vaccine was required/recommended? I truly don’t have the answers, but it’s something I’ve been thinking about a lot. Thanks, as always, for sharing your well-articulated thoughts with us here.

    • #17978
      Timothy Bransford
      Participant

      As I see it, this entire discussion reduces down to personal responsibility for the choices we make.  If you fear a vaccine more than you fear being rejected for organ transplant that is your choice.  And the consequences of your choice are your responsibility.  The shortage of organs from doners when compared to the demand by dying people makes it imperative that the organs that are transplanted are given to those with the best chance of survival.  75% of the people in ICU that die of Covid are unvaccinated.

      • #17980
        Paul met Debbie
        Participant

        Thank you Tim. You are right, it is a matter of choice for the patient if he is forced to make this choice. But the question I tried to address is, whether it is legal or ethical to create this situation where patients have to choose between the vaccine or the transplantation.

        Donor organs are scarce and this is something that we might want to solve somehow. I propose that this is not the way to do that. Scarcity of the organs should not play a role in this situation. There are better and more effective ways to address the scarcity problem.

        That 75% of people in the US that die in ICU of covid are not vaccinated is also a function of the low rate of vaccinated people. And it does not mean that, when not vaccinated, you have a 75% chance of dying from covid in ICU. The overall chance of dying from covid is actually pretty low, probably below 5%. And it is about 20% higher for transplanted patients. But 20% of a low chance is still a low chance in absolute terms: it will be around 6% then. There are hazardous hobbies or occupations that pose an overall much larger chance of dying than covid. For instance high mountain climbing (50% dies in the end, if they go on long enough). Should we force transplant patients to give up a hobby or occupation like that too? And if we think that is right, shouldn’t it be decided with a legal basis, in stead of by the whim of a hospital directors?

    • #17982
      Patti Rowland
      Participant

      Taking these people off the transplant list was the right thing to do.

      Is the patient not worried about the inflammation to the heart caused by COVID itself?

      The same people using the no vaccine because “fetal cells were used” excuse are getting monoclonal antibodies that also used cells derived from fetal tissue year ago. It’s just become their political statement and I am sick of it.

      The rest of us are collectively paying the price of the the selfish few. Thankfully our parents generation was not so selfish or we would all be still fighting small pox and polio.

      Trying to compare a once in a generation pandemic that has cost 900,000 + American lives to “hazardous hobbies and occupations” is just ludicrous.

      Please stop.

    • #18009
      Tim Blowfield
      Participant

      My wife has been told she will never get a transplantation due to her age – over 70. Not that she wants one as it would not solve many of the co-morbidities that Cf has given her. I Just want VERTEX and our Australian Government to make Trikafta or another modulator available to her.

    • #18012
      Paul met Debbie
      Participant

      Yes Tim, I can imagine. It’s a hard thing to swallow that Australia has decided to not (yet) allow Trikafta. It’s an entire continent that they are denied access to, but with only 25 million inhabitants it is not a decisive market for Vertex to fight for, so they might not be willing to drop their exorbitant prices enough for Australia to strike a bargain.

      On the other hand, how many CF patients in Australia are eligible or Trikafta? 1800 perhaps? So this would amount to 700 million dollar a year. For a country that has a GNP that exceeds that of the UK, France or Germany it must be feasible to pay for this drug. All of these countries (and even many smaller and less rich countries in Europe) have been able to reduce the price of Trikafta in negotiations with Vertex, so why not Australia? Australian government should take a close look at this.

      Did I understand it correct that the other Vertex modulators are being subsidized in Australia, so only Trikafta is not? That is a weird situation indeed. Are there any legal actions taken to address this discrimination?

    • #18017
      Tim Blowfield
      Participant

      Thanks Paul,

      Yes. The other older modulators are available through the PBS (Pharmaceutical Benefits Scheme) but only for pwCF with only one or a few more common mutations. Orkambi is available for just 8. Trikafta is registered only for pwCf who have  F508 on at least one of their chromosomes (the other chromosome must have a minimal/reduced function mutation).  I believe that will be about 2800. Adding the rare mutations such as what Reva has will add about 10. I doubt that Australia’s GNP exceeds UK, France nor Germany’s but it is quite adequate to fund it. Another problem is that the bureaucracy in place does not allow our highly trained and experienced CF Specialists to even try it unless you have the ‘right. mutation.

      Trouble with Australian politics  – ‘Liberal’s lousy and Labor is no better.’ That hasn’t changed since I first made the observation in the Egerton College (Kenya) Senior Staff Room in 1976.  Solomon was right ‘there is nothing new under the sun!’.

    • #18030
      Lisa Stackhouse
      Participant

      I absolutely agree 100% with Patti Rowland.  I had my double lung transplant 6 yrs ago.

      There are a range of other vaccinations you must have or be up-to-date with to be listed for solid organ transplant.  COVID vaccine is no different.  Solid organ transplant evaluation has a comprehensive list of tests that need to be administrated and passed, especially for the lungs.

      The person being considered for transplant must have the value of responsible stewardship of a donated solid organ.  Every day I give thanks to my selfless donor (Jasmine) and her family for giving me a second chance in life.  Now that my chest cavity has Jasmine’s precious lungs, I try to honor her everyday by doing all I can to protect them.

      If a person needing a transplant is not willing to get the COVID vaccine they are already showing signs of being non-compliant.  Compliancy being post-transplant is critical, especially when it comes to lungs.  Lungs have the lowest survival rate of all organs.  In addition, they are under constant threat because you are constantly breathing in air of all sorts.

      Chances of infections are higher for all transplant patients because our immune system is suppressed to our body will not attack our new organ.

      Why should a noncompliant patient (COVID unvaccinated) be put on the transplant list and sit next to a compliant (vaccinated) transplant patient?  Science and research need to be trusted and respected!!  As people living with CF, we understand compliancy and all that science and research has helped to improve our lives and live healthier.

      GET THE VACCINE, people! Help us immune compromised people start to try to live a more normal life.  It has been a long 23 months!

      In this paper there is also a strong recommendation for the primary caregivers and/or caregivers to be required to get to be fully vaccinated for COVID: Requiring vaccination against COVID-19 of the patient’s primary support person and eligible members of the recipient’s household is consistent with current requirements of those roles.

      https://www.jhltonline.org/article/S1053-2498(21)02539-0/fulltext

      • #18033
        Paul met Debbie
        Participant

        I planned not to react to his topic that I created because of the emotional reactions it produced. And because of the request of one of them, Patti Rowland, to “please stop”. I don’t want to cause suffering. But since the discussion keeps going on, I do feel obligated to tell the other sides of the story, that seems to have vanished completely from many people’s view. And I understand why this has happened, because it is a very complex situation indeed.

        I do not write this to convince any one that already has made up his mind and knows exactly what should be done. I write this for patients who are in similar situations as the cases that I referred to, who were on the list for transplantation and were taken off without mercy. Many patients will still be on those lists that are unclear about vaccination. They will have their reservations about getting a covid vaccine for all sorts of reasons. And they wonder if there is any support for their doubts. Perhaps what I write here, will give them a little bit of that support and clarity, and will make them ask the rights questions and make a decision that they feel good about. That is a freedom I want to protect as well.

        And let’s make this very clear: I am not against vaccination, I have got my shots. But I also know – and always knew – that shots are not the main and only solution, so I am still in isolation, even when not transplanted. No vaccine in the history of human kind has ever protected us against an airborne airway virus unless there was 98% vaccination coverage like for the measles. And if vaccination drops even a little below this, in a certain period of time or in a certain area of the country, immediately small measles epidemics flare up. The virus is not gone, it is waiting. Covid will do the same, only we will get 98% vaccine coverage. The vaccines are not good enough and the coverage will be neither. It will be much more like the flu. That’s why we still have the seasonal flu, despite anti-flu vaccination. Even hospital workers has never been convinced to take a flu shot every year, they only complied for 50%. Before covid, both my wife and I isolated ourselves in the flu season. For years since 2010, between December and March we stopped teaching our art-students, stopped visiting relatives, concerts and other public obligations. Now, because of covid, which is basically slowly turning into a full-year flu, we are in isolation full time. Because I know this is the only way to prevent infection and it is far superior to any vaccine. With a 28% FEV1 I can’t permit an infection like this. Social distancing and wearing a good (ffp3) mask protects against infection for 99%. No vaccine will ever do this. I haven’t seen some close members of my family (my eldest sister for instance) in more than 2 years, so I know how it feels to want isolation to end. But I am not convinced at all that vaccination is going to do this for people like us, pwcf, and transplanted people in particular because they are too much at risk. Not in the short future. I am intuitively counting on 5 years, from the start of this pandemic at least. So perhaps end 2024 it could be safe enough again to resume normal life in summertime, if a mutation has occurred that is no more aggressive than a normal flu and only appears in wintertime. And for the wintertime we will get our new style combined covid-flu vaccine, by that time it will probably not be experimental anymore, like it is now. And it will protect about 50% – better than nothing. But no doctor will refuse any patient a transplantation for that then, I am sure of that. Even in the article that Lisa provided, it is already mentioned that if protection of the vaccines gets worse, they might not require it anymore – so the way out of this unwise choice is already provided.

        Although the article that Lisa refers too is not bad – thank you for providing it! – it by no means tells the whole story. This is because the whole story is not well established yet. Covid is still so new, that many things are not well known, not even to medical science. And this applies even more to the subject of transplantations and immune response. To require vaccination for transplant patients on basis of this situation and then acting like it is all clear, is very unscientific actually. And there are other agenda’s (political, financial, insurance) at stake that cause this. Sure, requiring vaccination is common practice, but that doesn’t prove everything. Some of those requirements might not have been so sound either, in retrospect. And those vaccines have been tested for 50 years, and are by no means as experimental as the current covid vaccines are. I understand that if you have been forced to comply to those rules when you were up for transplantation surgery, you want others after you to comply as well. That is a human reaction. But two wrongs don’t make a right. And society will not get more unsafe if transplantation patients are not covid vaccinated. The numbers as simply too small for that, and there are many more ways to protect against covid even better than with a vaccine.

        Sure, we need to be careful with scarce organs. But the scarcity argument doesn’t seem to be the real reason to withhold transplantation either, because transplantation was also refused in case of a kidney patient who provided his own living donor. Both donors chose not to be covid vaccinated and were perfectly willing to fulfill all other requirements and do their utmost to not get infected by other means of protection – still they were refused. The argument that all these requirements are in the interest of the patient is not valid either, because refusing transplantation is clearly the worst thing that you can do to a patient on the waiting list. There must be more humane and subtle solutions to deal with unvaccinated patients, with those who refuse vaccination or can’t be vaccinated for other medical reasons for instance. So, other factors must have been involved. And these are political factors, but hospitals administrators and doctors are not chosen by the public to practice politics. This is the task of government and law makers. And financial factors, because hospitals want a good statistical record in transplantations, otherwise they loose their license to perform these kind of surgeries. And transplantation surgery is one of the most lucrative parts of the hospital revenue model, let’s not be shy about that.

        Medically it is all not so clear at all, I fear. A recent Dutch study among lung transplant recipients established that, due to the immune suppressive medication, these patients hardly reacted to covid vaccination after transplantation. Only 13% of those patients made enough antibodies after vaccination. And among kidney transplant patients in 67% of these patients they found no or hardly any antibodies after covid vaccination. And these studies were done before omikron, and it is known that the current vaccines protect a lot less against omikron than they did against delta – so currently, the situation is even worse. Lung transplant patients that got covid and survived however, have a good immune response after vaccination with one shot.

        Although a vaccination before transplant does of course produce a normal immune response (the patient not being on suppressing medication yet), the situation after transplant is a completely other story. It seems therefore that the requirement of vaccination before the surgery is more beneficial to the short time survival statistics of the hospital, than it is for the patient on the longer term. Since the current booster vaccinations only produce a 70% protection for 2 to 3 months, after which the protection sinks below the required 50% (vaccines that protected less than 50% were not considered for approval in the first place), the effect of vaccination prior to surgery is likely to wane very fast. And post transplant vaccines are almost ineffective, this study shows, unless the patient got covid and survived (the disease is a bigger trigger for antibody production than the current vaccines). And we can’t enforce vaccination after surgery at all.

        This also means that these transplant patient will have to rely on other measures like social distancing, mask wearing etcetera for years to come after transplant, even when vaccinated. Only group-immunity on the longer term (which only will occur if no new mutations of the covid virus occur for a long time – and if resistance after infection lasts long enough, not like the current flu for instance) might release them from isolation after transplantation. Sure, vaccination is a good way of reducing the pandemic to endemic proportions, but that doesn’t justify what happens here for transplant patients. And even in endemic situations, transplant patients can not rely on vaccination. There are much better ways for them to prevent infection.

        It is a complete and utter fallacy to call patients that do not want vaccination to be “non-compliant”, since there are many ways in which a patient (or anyone for that matter) can protect himself against getting infected with covid (or the common flu, or other airborne viruses). Social distancing and wearing a good mask is still much more effective against getting infected than any vaccination. A vaccination is even not at all effective against contracting covid, it only relates to what happens after infection. A patient  who is willing to protect himself with good measures after transplant (and which transplant patient would not do that? They want to live, don’t they?) should be considered even more compliant than a patient that “only” complies to vaccination and does nothing else to protect himself.

        So, not only the legal situation is not sufficient to justify a vaccination obligation for transplant patients, and surely not by refusing them a life-saving surgery, the medical situation seems to be very weak as well, to say the least.

      • #18038
        Patti Rowland
        Participant

        Thank you Lisa for posting the link to the article. I enjoyed it, especially since it was written by actual Doctors!

        I hope the worst of this pandemic is behind us. Not everyone has the luxury of “isolating themselves during flu season” or taking off work from Dec – March.

        My adult daughter is the one with CF in my family. I was in the Moderna clinical trial for the vaccine as I wanted to feel like I was part of a solution. I also selfishly hoped for an early vaccine to avoid bringing the virus home to my daughter. I was lucky to score the actual vaccine as opposed to placebo.

        It sounds like you are doing well with your transplant, I wish you all the best! 🙂

    • #18040
      Paul met Debbie
      Participant

      Dear Patti,

      I salute you for being in the trial group for the Moderna vaccine. Debbie and I were in fact recipients of that vaccine, so in a way we owe some of the protection against covid to you as well. I don’t know if I would have had the courage of being in that trial, but parents of vulnerable children often display this kind of Lionhearted courage.

      Please don’t shoot the messenger, I am only referring to knowledge from established scientific sources, from research done by real doctors. I shall post some links to recent research about the inadequate response to covid vaccines by transplant patients. They show that many of those do not or very poorly react to vaccination, even after 4 shots. And lung transplant patients are most at risk I suspect, for they generally take the highest dosis of anti rejection medication compared to other transplant patients.

      Isolating from the flu and covid doesn’t feel like luxury to us. We didn’t take off from work but worked at home and still do. We sold our own house and moved to a small rental appartement to compensate for the blow in income we had to take.

      The only way to know if your daughter is prototected by the vaccines is to do a bloodtest on antibodies. I don’t know if your doctor can arrange for this but if I were a parent I would fight for this.

      Please stay safe and we wish you and your daughter all the best.

      From the Netherlands with love

      Paul&Debbie

       

      • #18041
        Paul met Debbie
        Participant

        As promised:

        https://www.acpjournals.org/doi/10.7326/L21-0598

        https://www.science.org/doi/10.1126/scitranslmed.abl6141

        https://onlinelibrary.wiley.com/doi/10.1111/tid.13728

        Only just today a publication appeared in the main Dutch news website (NOS) stating, that due to the current abolition of almost all of the lockdown precautions, the extra vulnerable people are more at risk than ever before since the pandemic started if they want to participate again in social life.  Endemic situation is much more dangerous for them than the pandemic. The renowned virologist Alma Tostmann of the university clinic in Nijmegen (the city from the famous 1974 war-movie A bridge too far) acknowledged the situation and was appalled  with the fact that even simple precautions like wearing a mask, keeping 5 ft distance and working at home were no longer advised officially, although in some hospitals these rules still go (so far).

        She tried to formulate some things that vulnerable people could do to protect themselves:

        – ask people you are going to meet to perform a self test;

        – take care of good ventilation of the room where you meet people, or only meet outside;

        – keep distance;

        – ask visitors to wear a mask and wear one yourself as well.

        She advised the ffp2 which is 95% protective; note from me: a surgical mask (the blue/green thingy) is only 50%;  and ffp3 is 99%);

        – ask people who you are going to meet, what they did in the previous days; if they have met many people or for instance visited the nightclub, postpone the visit.

        These are exactly the things that Debbie and I already did in wintertime since 2011 to prevent getting infected with flu or even common cold. We have not been infected with any (!) virus since. And now these seem the normal measures we have to do against covid, not only in wintertime, but the whole year round. In the beginning this can feel a little awkward, but it soon becomes second nature. All of our friends and family members know that we do this and why, and they even pro-actively tell us in case they feel there is a possible risk for us. It works fine.  We recently stocked up again on good ffp3 mask and disinfective alcohol for the coming year.

        Be careful and keep thinking for yourself! The government and official institutions take and leave measures as they see fit or at random, but they have a multitude of interests to take care of, many are not medically sound but economically and socially induced. They can of course pronounce now that it is safe to mingle and socialize again like in the olden days, but they forgot to inform the virus that it should behave differently because we think so. The virus is not listening, alas. It is waiting for opportunities to procreate, for that is what nature does. Comply to nature, that is the best way to behave.

        Take care!

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