I know I am treading on dangerous ground here, and as usual I will be the fool that goes where angels fear to tread.
Two recent happenings set off this blogpost. A good friend (Pastor Rajkumar) asked me to put together my major complaints about Christianity...
I couldn't do it right then, but it got me thinking. Then, a young friend questioned me about a facebook post I'd done that was critical of some modern atheists including Dawkins and Hitchens, and asked me to clarify where I stood on science and Christianity...
Well here I stand! I am a firm believer in Jesus. I think I know Jesus and I'm even more confident that Jesus knows me. But, I do not like much of the religion of Christianity. So, here are some rather randomly put together thoughts on some of the things that I don't like about Christianity:
Youth
are not encouraged to question their faith. When they meet serious
questions they are unable to answer and get shaken. In fact to take this a bit further, the teaching of "no doubt" is ridiculous. We do live with and in doubt, and the less we teach our children about how to deal with reality the less good we do them.
We
teach theology and theory instead of Jesus. Paul says he preaches Christ and
Him crucified. We should stick to that and strip off all speculation. I think the
way to knowing Jesus should be through a deeper understanding of the gospels - which are our primary sources.
Instead of immersing ourselves in Jesus and His words of life, we turn to
the much misunderstood epistles and end up building our theologies and ethics
from contexts that we have no way of understanding.
Our
basic understanding of concepts like sin and forgiveness, righteousness,
justice, mercy, love, wrath, and indeed of God’s own nature and relation
to us, and what the gospel is that Jesus taught, are based on selective
readings and improper understanding of Jesus/Pauline teaching. We need to
reexamine each of these in the light of the gospels.
We
have glorified the church; in fact we have created monsterous organizations that seriously
detract from whatever would/should have been Christianity. It is without
doubt that building the church has become the primary function of
Christianity. The gospel has been subverted to that task and has suffered for this. In fact, our
glorification of theology is primarily a church building activity, and creates an extrabiblical
authority that has modified the gospel to suit the uplift of the church.
All
that is found evil in the world has been imported into churches, as is
natural when groups of people get bound together by an organization rather
than by true belief.
-We have glorified wealth/status
as a sign of God’s blessings and favour.
-We reject the poor, the
suffering, the disenfranchised, the despised, the sinner, the marginalized in
society, and so we have left Jesus and his gospel far behind us.
-Hierarchies are all too common.
-We make much of our liturgy and
of our church buildings refusing to recognize that these are the trappings of
idolatry.
Bibliolatry
also figures especially in conservative-evangelical circles. We have a
view of the bible that is not supported by the bible itself and is
detrimental to honest belief.
Our
interaction with science (broadly including social science, anthropology,
history-archaeology, biology, and physics) has been ridiculous. We look at
science as philosophical and therefore as a rival to Christian philosophy,
whereas by doing this we have abandoned science to nonbelievers. We teach
our children defensive ways of understanding science so that it is not
allowed to conflict what the ‘church’ teaches as truth. God becomes a god
of the gaps, and the gaps where we try to hide this god become ever
smaller.
Our
ethics are based more on societal and cultural norms rather than on the gospel.
I am not a Jesus vs Paul person, but again, I think we tend to
misunderstand Paul’s epistles and build our ethics on principles that are
not traceable back to Jesus’ gospel. We also ignore the fact that Jesus
reframed OT teaching in a whole new way and ignoring our Lord, still try to bring long dead
OT concepts into our ethics. On the whole, our failure to understand
temporal concepts in the bible is a major stumbling block and we add insult to
that with our habit of selective application of only those OT principles and
practices that seem conducive to our concept of what Christian ethics is,
as taught by the church.A case in point in South India is the support for casteism that is theologically derived from the tribalism of the OT!
Any religion is supposed to help point the way to God. Yet all religions end up pointing the way into their own folds, and therefore end up obscuring the way to God. The servant becomes the master!
Denominations are abominations.
Pride! One would think that the discovery that we are desperate sinners, saved purely by God's grace, would leave us humbled. Yet, the opposite happens. I remember that humbling beginning, but it was all too soon replaced by a growing pride in my newfound theology... I went on to quietly believe that 'unbelievers' were missing something, and then went on to believe that because I was 'blessed' I was a complete human being - the corollary being that others were not. Of course, I don't believe this was a conscious progression, or let's say I hope it wasn't. But the result, eventually, was that the humility disappeared and was replaced by a very silent but real pride. Eventually, then, the world got divided into the blessed saved ones - and the unblessed (all the rest). The blessed ones are by definition those within the church, and perhaps more particularly, those who have protected their faith with the most correct theology. -It took a very long time for me to realize that I was wrong. -If loving others at least as much as oneself is the starting point to obedience to God, then in spite of my 'true-believer' status, my faith is suspect. By the same reasoning, those with better praxis, are better believers, even if they have nothing to do with church or Christianity. When Jesus demands action, then actions will always speak louder than words.
Finally, to end my rant with a political question - where does the church stand on issues of human rights? The church has always been a political handmaiden to the powerful. The Reformation only realigned the church's political dealings, it did not eliminate it.
-The most glaring failure of today's Christian church has been its misinterpretation of the gospel to support oppressive, genocidal regimes. Dare we ask ourselves what Jesus would say if he saw how we deal with Israel & Palestine? Yes, there are a few professing Christians who are horrified by Israel's blatant racism and even more blatant Palestine bashing, but these Christians are a tiny minority. Most prefer to close their eyes and ears to the truth that stares at them every day in the news, on facebook, and on Twitter, and blithely stump the church's litany of so called 'biblical' support for the state of Israel.
More generally, what do we think a Christian foreign policy should be? What of Bahrain, what of Saudi Arabia, what of the various 'istans' who form the bulk of the friends of the "Christian nation" of America in the near East? Yes, this is not the church speaking, but neither does the church care to or dare to speak out!
Many a bewildered young (or sometimes even older) Christian is left to wonder at the huge gap between the gospel and the reality of Christianity - and not a few have decided that the gap is just too great!
If you are terminally ill with one of the numerous diseases for which modern medicine seems to have no answers, or if you are involved in trying to find alternative treatments for someone in this position, then you will want to explore every possible treatment option - but can you, and can you do so ethically/legally?
The issues that arise are big and very important. A recent discussion at LinkedIn's Cell Therapy Industry Group examines some of these issues, and it got me thinking. The Nobel laureate Dr. Ralph Steinman blazed a lonely new trail, and one that is worth examining. There's an excellent writeup in the New York Times ("Is the Cure for Cancer Inside You?") on how Dr. Steinman courageously used his own pancreatic cancer to further explore his treatment options. I'd highly recommend that you read that article before delving into the issues raised on LinkedIn.
As it stands, a terminally ill patient will have a very difficult time emulating Dr. Steinman's example. The regulations in most countries, and especially in the US, simply forbid an extremely individual approach to treatment. There are the standard, tested courses of treatment available to all, but stepping outside of approved treatment protocols & regimens is mostly prosecutable, could well result in a physician losing her license, and probably stiff monetary consequences.
But that leaves the terminally ill patient in a very unenviable position, for it is also acknowledged that following these "standard, approved", treatment options will result in fairly certain and fairly quick mortality. In other words, it's because the treatments are failures that patients are thought of as 'terminal'. Technically, it is possible for a patient in consultation with his physician to try to get approval for an experimental treatment, but that is a lengthy and laborious process (perhaps by design), and when time is of the essence...
What many patients opt for instead, is to enroll themselves in one of the many clinical trials revolving around their particular illness. Again, not a terribly exciting option, for there's a very big chance that you will end up as a 'control' and receive a placebo perhaps with the nonfunctional standard treatment. Even if the particular experimental treatment works for some of the patients in the trial, that might not be you. Even if it worked well in the trial, there's then no telling how long it will take for it to come through the regulatory processes and become an available option for you. One is left with the dubiously satisfying notion that by participating, one has perhaps pushed the cause of science a little further, and very likely at the cost of one's own life!
When we think of what Dr. Steinman achieved, he can be seen to have blazed a trail through the impenetrable jungle of federal regulation. His drive, focus, and stubbornness speak volumes and he achieved the near impossible. We are amazed, for even though he was in a unique position, able to direct his own well-funded research, and to request, and get, an incredible degree of cooperation from eminent specialist researchers from all over the world, he not only got away with it, he indeed seems to have succeeded in prolonging his own life well beyond the norm for the kind of disease that he was suffering from. His example is both inspiring and inspires despair in those who have not his level of influence and are not researchers in their own right.
And this brings up the question of ways and means. In short, at present there are none. The regulations are stultifying. Some of the very rich may be able force their way to their own experimental treatment (one thinks of a Steve Jobs), but for all the rest there are neither the funds, nor acceptable methodologies. Funds would probably be available if there was a clear path to commercialization, but when we are talking about individualizing therapy for the many millions who may be considered 'terminal' it is precisely the lack of any business model that is a big problem. One could go further, for if our cures are primarily found within ourselves, the days of 'big pharma' are probably numbered anyway.
Ideally of course, wherever business fears to tread should precisely be where the government steps in. Unfortunately, the whole picture of drug/treatment approvals has been hopelessly skewed to cater to the major business interests, and the entire regulatory mechanism simply sidesteps the needs of the hopelessly uncommercial 'terminally ill.' The poor patient, and that could be you or I too, just down the road - are left to the tender mercies of the licensed to kill 'standard, approved' treatment options!
The regulators are not just being stubborn. From the standpoint of regulating authorities like the FDA, one problem is accountability, as they are ultimately responsible for each life lost in a medical setting. A failed, poorly tested, poorly understood experimental treatment attempt, even when wholeheartedly entered into by a patient-physician combo, does not let them off the hook. It's also easy to see that the terminally ill patient population is particularly susceptible to quackery. Any hint of hope offered, can become irresistible, and can very easily be a conduit for parting the desperate patient from whatever funds they may have or be able to raise. Folks do need protection against such quacks.
What really is a federal regulatory authority's main purpose? An FDA is first and foremost tasked with safeguarding the health of an entire population of many millions - and that is what they are structured to do. They are simply not in a position to handle individual requests for individual therapies. The very nature of the highly individual immunology-physiology of most intractable diseases, the genetic variations that affect outcomes, and the immense number of potential treatments that could be opted for, means that blunt regulatory tools that work well for protecting large populations are completely (woefully) inadequate at an individual level.
I think it's possible to closely regulate the workup and counseling of patients with terminal illnesses, and still allow the patient and their physician to be the deciders on how to best proceed and with which particular treatment, however experimental. After ensuring a complete History and Physical is taken, and all previous medical records are on file, the data to be gathered and generated during the treatment can be rigorously specified so that each patient's progress can be carefully monitored while a meaningful database is developed which can be openly accessed and studied by researchers.
What it should boil down to, is that apart from setting some overall boundaries and demanding rigorous clinical records to be maintained, the regulatory authorities can safely stay out of fiddling with an approval process for each individual case. Certainly counseling can be required, both in the beginning and at regular intervals during the process of treatment.
Where does big pharma fit itself into this picture? Well, here is a troubling problem. For one thing, the present process by which drugs gain approval is heavily tilted towards a big pharma R&D to clinical trials scenario. Eventually, a drug that has gone through this process will be released for use by a huge medical community, and big pharma gets to recoup their costs and then make a healthy profit.
In spite of this, big pharma could well participate at an individual level and even help with providing funding and/or material support in the form of therapies under development. Unfortunately, and understandably too, most companies are leery of allowing their drugs under development to be used in situations that might just earn the drug a bad name while it is still in the midst of an involved and costly approval process. Any false step may well kill off a promising drug candidate early. Some creative thought on a thorny issue is warranted. The facilities available to big pharma for developing individualized therapies are unparalleled, but without a payoff, these will remain unutilized.
The combination of millions of cancer subtypes, evolving cancers, and the individuals' own incredible variability, is mind boggling. The same is true of other common terminal illnesses like multiple sclerosis. So many irreversibly progressive illnesses have strongly individual characters and require individually tuned therapies. One person's illness, even when apparently classified and staged in common with other 'similar' patients, can still have a stubbornly unique progression. It's only natural then that the treatment too has to be individually designed.
Clinical trials, as now commonly set up, are geared to large numbers where individual responses are unimportant. Results instead have to attain statistical significance when compared with the placebo groups (effectively the untreated 'control') in order to count for anything. Of course, with the advent of big data, as well as the deeper analysis of results, we are increasingly seeing subgroups and subtypes identified, and there is now more appreciation of individual responses. When a system is designed to test overall statistical trends, it's not surprising to note that it has resulted in a regulatory framework that's almost impossible to adapt to an individual's needs. The system has fed off itself and spiraled into an inflexible megalith. The system is also what 'big pharma' is happy with and is very happy to maintain the status quo.
I have only touched on some of the very many issues surrounding this discussion. It should be obvious that new ways of funding individual therapies need to be worked out. Only a tiny proportion of people will be able to work on their own disease as effectively as Dr. Steinman could. He had at his disposal a large, well funded research establishment, and there will be none who are similarly blessed. Again, I think creative solutions may occur to those both in and outside of 'big pharma' who may see an opportunity to bridge their own transitions through the upcoming changes in how medicine is to be done. It follows that it will behoove the insurance sector to follow suit!
Dr. Steinman has shown us the tremendous potential of allowing the terminally ill patient to explore individually tailored therapy. If we properly organize and carefully gather the data that results and then study it properly, it will eventually prove a broad and useful base for increasingly meaningful 'terminal' decision making. What looks from a scientific standpoint to be hugely messy, may eventually prove to be the path to a new way of doing medicine, not only for the terminally ill, but for every patient, and indeed for every single individual.
In one (critically important) sense we are all terminal, we just don't generally choose to face our own mortality in such stark terms.
You may also want to look at theseupdates: 1. Autologous cell therapies: challenges in US FDA regulation: https://www.box.com/s/waxwfciz1eqxsbinvmxu?goback=.gde_135553_member_195931915 Discusses why autologous cell based therapies (i.e. stem cells from our own bodies) are yet to make the kind of impact expected of them. Again the FDA is the main culprit. Read it for yourself...
Stem Cell Showdown: Celltex vs. the FDA http://www.businessweek.com/articles/2013-01-03/stem-cell-showdown-celltex-vs-dot-the-fda
The Truly Staggering Cost Of Inventing New Drugs: http://www.forbes.com/sites/matthewherper/2012/02/10/the-truly-staggering-cost-of-inventing-new-drugs/?goback=.gde_3363923_member_199828696
Regenerative Medicine: Engineering Its Continued Success:Geoff Mackay, http://genengnews.com/bioperspectives/regenerative-medicine-engineering-its-continued-success/4653
Cell-Based Therapies for Malignant Brain Tumorsby Nousha Khosh on Tue, Jan 15, 2013http://info.sanguinebio.com/neurology/bid/202701/?utm_campaign=Researcher-Facing&utm_source=linkedin&utm_medium=social&utm_content=00e7420a-411f-4b74-b7b0-3eccc98279a3
FDA Challenges Stem Cell Companies As Patients Run Out Of Time NPRhttp://www.npr.org/2013/02/02/170942324/fda-challenges-stem-cell-companies-as-patients-run-out-of-time
2. Stem Cells and the Lawsuit That May Shape Our Medical Future - ForbesFDA gone wild! A very informative Forbes Article: http://buff.ly/14605kUupdate on Feb 28, 2013
See the Patients for Stem Cells site and their research into the safety of stem cells for treatment :Patients for Stem Cellshttp://www.patientsforstemcells.org/ update March 13, 2013
If you are a LinkedIn member, check out this fascinating discussionthat nails all the facts to date: http://linkd.in/15MkmPf
Now, an article in EMBO warns of dire consequences if the usual route of clinical trials etc. is bypassed in Italy and they draw the very odd analogy of BMT (bone marrow transplant)! The EMBO article is available in full and EMBO also did a short summary of it. Now, this is timed to affect the debate in the Italian parliament that threatens to legalize the use of autologous stem cell therapies and leaves the decisions in the hands of the patients and their physicians when the disease that they are attempting to treat is terminal. I'll keep the readers posted on where that ends up!
4. The Other Side of the Stem Cell Coin! Over regulation etc.
The famous journal Nature and the US FDA have been arguing that unauthorized stem celltreatments are potentially very dangerous, that the science is not simple, in fact is very complicated, and therefore is fraught with risks of everything from tumors to immunological complications. I refer you to what is generally available after googling the issue:
There are two major problems with the FDA's approach. First, if a patient asks what stem cell based "approved treatment" options exists, the answer now is essentially nada NONE. Second, it is very unclear indeed as to what the process is like to become an approved stem cell treatment center. Beyond these basic flaws (which are rather fatal to the FDA's claims), it also looks like the FDA is itself trying to do the basic research on stem cells, bypassing the whole of the established research community, and this means that whatever they are going to DO eventually will take an unforgivably long time. I am not an expert on any of these matters. I do hope (as a blood banker), that the incredible infrastructure that exists in blood/tissue banks can be put to even greater use by including stem cell processing/storage as a routine. All that would require is for the cGMP and acceptable protocols to be published by the FDA. However, that hope is very faint at this point! Technically, all the 'issues' like needing safe, sterile closed systems, can be easily overcome!
Here's an article in the Monday, October 3, 2011WSJ by Dr. Scott Gottlieb a former Deputy Commissioner of the USFDA : How the FDA Could Cost You Your Lifethat well illustrates some of the startling problems faced from over regulation by the USFDA.
And now this - a 10-year old girl who desperately needs an adult lung transplant is ruled inadmissible 'too young' by the US FDA Watch it here - http://video.foxnews.com/v/2431370334001/parents-race-to-save-sarahs-life and it took a judge's order to get her the transplant. The parents pleas to the FDA fell on deaf ears
5. On the commercial problems faced by autologous stem cell therapies, here's a decent writeup-analysis of the difficulties faced by one of the SCSI's members Aastrom http://bit.ly/Zy3SYk
6.The fight for the genome. If human genes can be patented, a huge revolution in medicine will die a quick death. The fight is on now. Here's a brief rundown by PBS Nova: Are Gene Patents Standing in the Way of Personalized Medicine?
7. Find out more about a model for making stem cell therapies clinically realistic :"For the past four years I have been following the work of the ‘Blood Pharma Project’,
which is seeking to culture red blood cells in the laboratory from
pluripotent stem cells, with the eventual aim of creating a clean and
unlimited source of red blood cells for transfusion." Emma King - http://www.eurostemcell.org/commentanalysis/making-red-blood-cells-model-stem-cell-therapy-development
Please do let me know of any advances/changes as they occur by posting comments below, so that we can together try to keep the information current and useful.