Tag: patients’ rights

Breaking the Bottleneck: A Synergy of Technology and Medicine – Article by Zach Richardson

Breaking the Bottleneck: A Synergy of Technology and Medicine – Article by Zach Richardson

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Zach Richardson

In March of 2019, I began to have a very strange problem. I was breathing normally, but felt like I was suffocating. The problem became much worse when lying down, but seemed to come and go arbitrarily. Some days it would be really bad, and on others I didn’t even notice it. This happened twice in a week, and I checked with a doctor. He assured me I had anxiety and gave me a prescription for some anxiolytic medicine. I couldn’t breathe, and his solution was Xanax. I stupidly trusted him.

In May 2019, I ended up in the hospital. My body was turning yellow, and my liver, kidneys, and heart were failing. The cause was idiopathic; none of the 7 specialists knew why I was having congestive heart failure. A couple of drugs were tried, but in the end the only solution they said would save my life was the implantation of a mechanical device that would help my heart pump: a Ventricular Assist Device, or VAD.

I was lucky enough to be selected as a perfect candidate for a clinical trial, partially due to being particularly young for having Congestive Heart Failure (CHF). A new version of an already cutting-edge technology would be tested on my body, and the results would be recorded for their study. The machine they implanted was called the Heartmate 3, and it saved my life.

The VAD is currently used either as “bridge” or “destination” therapy, with “bridge” meaning that it is used only temporarily until one can get a heart transplant, and “destination” meaning that one is ineligible for transplant at all, and will have the VAD for the rest of one’s life. Some of the contraindications for VAD implantation being bridge therapy include being obese or over 65 years of age. Luckily, I am not either of those two, and therefore am eligible for a transplant. However, there are two factors that are going to lead to it likely being an extremely long time before a donor heart is available. One is that I am a larger man, standing at 6 feet tall, meaning I require a larger-than-average heart. The other is that I have Type O blood, which is the hardest from the standpoint of receiving an organ donation.

This puts me in a very interesting situation, where I am a young man who may have many years still ahead of him with an implanted device. It may be 7 years from now when I get the call for transplant, or it may be tomorrow. If it happens 7 years from now, there may be therapies that will have been developed that would allow me to regrow my heart, or clone one from my stem cells, and thereby avoid having to be on a cocktail of immunosuppressants indefinitely. Unfortunately, even Athersys only has CHF treatments in the preclinical stage, which means I may have to wait a while. I intensely wish those trials weren’t being constrained like they are.

Having set significant life extension towards the very top of my hierarchy of values, I am extremely grateful that I live in a society where these technologies are available to me. I have a highly personal interest in seeing a society of scientists and biomedical engineers emerge to help develop these technologies! However, part of my situation was just me getting lucky: I had the treatment I needed approved just months before receiving it, and happened to have top-notch insurance.

One unfortunate side effect of having a centralized regulatory system is that the Food and Drug Administration (FDA) is only held responsible for what are known as “Type I Errors”. A Type I error is where the FDA passes an unsafe drug or treatment, leading to harm to an individual or group. Unfortunately, this means that FDA officials do not seem to care at all about “Type II Errors”, where they do not pass a life-saving treatment or drug in time to save someone’s life. The FDA is so terrified of having another Vioxx incident, that FDA officials are overly cautious in approving the use of radically innovative and breakthrough technologies. The fact that these technologies carry some risk is something of no worry to someone who is going to die if they don’t get the treatment. It is much harder to blame the FDA for being too safe than it is to blame them for being reckless.

This is why I am proud to be a member of the U.S. Transhumanist Party (USTP), where science and technology are put at the forefront of American politics. The current bottleneck those like me with CHF face is regulatory hurdles. Article VI, Section VI, of the USTP Constitution states: “The United States Transhumanist Party upholds morphological freedom—the right to do with one’s physical attributes or intelligence whatever one wants so long as it does not directly harm others.” Right now what I and others with CHF would like to do is to get a stem-cell heart. We are being hindered not by direct legislation restricting morphological freedom, but by the far more pernicious hindrance of excessive regulatory burden. The treatments we want are being developed exponentially slower than they could be, because each step of the way has to adhere to draconian testing standards. This means a lot of Type II errors are being committed. We are not being told, “You cannot get this treatment.” Providers are being told, “You cannot provide this treatment.”

In my ideal world, regulatory agencies would work more like Underwriters Laboratories or Quality Assurance International. Leaving regulatory activity to the market, far from the fearmongering of producing dangerous and shoddy drugs and treatments, would instead invigorate the institutions as they would compete to certify the best products and treatments for consumers, since their names and reputations would be on the line.

I believe there needs to be a much stronger focus in regulatory institutions toward the elimination of Type II Errors, because there are a lot of sick people going untreated.

Zach Richardson is the Director of Publication for the U.S. Transhumanist Party. He is a Certified Supply Chain Professional and small-business co-owner who produced respirator-style masks to help stem the tide of COVID-19’s spread. 

Statement on the Tragic Death of Danielle Baker and the Imperative for Improved Protections for Cryonics Patients

Statement on the Tragic Death of Danielle Baker and the Imperative for Improved Protections for Cryonics Patients

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March 19, 2019: The United States Transhumanist Party / Transhuman Party (USTP) issues this statement in response to the unfortunate demise and cremation of Danielle Michelle Baker, which contravened her specific and documented wishes to be cryopreserved. We ask the members of the USTP to deliberate about specific measures that could be taken to prevent such violations of cryonics patients’ wishes and legitimate rights from arising again. These measures could include reforms to laws so as to improve protections for cryonics patients, as well as improved enforcement of existing laws which may offer some extent of protections at least in theory.

Danielle Michelle Baker, a 31-year-old cryonics advocate, disappeared on December 1, 2018, and was found dead on December 4, 2018, in Laurel County, Kentucky. Despite her expressly documented wishes and a legal contract into which she entered to be cryopreserved by Oregon Cryonics, she was cremated by Laurel County Coroner Doug Bowling at the behest of her family members.

Zoltan Istvan, the founder and former Chairman (2014-2016) of the USTP, now an independent commentator, transhumanist advocate, and USTP Political and Media Advisor, initially brought attention to Danielle Baker’s unfortunate cremation in an article published by Quartz on February 22, 2019, entitled “We need better laws to protect the rights of future frozen cryonicists”. Istvan then encouraged the USTP to provide more in-depth coverage to this issue than was possible through mainstream media outlets.

Zoltan Istvan expressed his views on cryonics to the USTP: “No longer just science fiction, cryonics represents the best scientific chance life extension advocates like Baker have to avoid permanent death. For those without faith in an afterlife, preserving the neurons, cerebral structure, and memories in their brains are the highest priority in both life and death. But the practice of cryonicists signing a Document of Gift doesn’t always work, as in the case of Baker, whose body was controversially cremated just three days” after her body was discovered.

Eric Homeyer, a USTP member and volunteer supporter of cryonics who assisted Oregon Cryonics in this matter but who is not affiliated with Oregon Cryonics in any official capacity, communicated to the USTP the story of Danielle Baker’s tragic and unfortunate situation from his point of view.

Homeyer relayed the following information: “It is rumored that [Baker] went missing from home since Saturday, December 1, 2018. She was reported missing on Monday, December 3, 2018. Her father found her deceased in the woods behind the residence on Tuesday, December 4, 2018, at approximately 3 p.m. I found out about her disappearance/death from a mutual friend when I was at home in Cincinnati at 9:30 p.m. on Tuesday, December 4, 2018. At that time I found out an Autopsy was scheduled in Frankfort, Kentucky, for the next morning, Wednesday, December 5, 2018. He asked me to go try to represent her interests since I was the closest cryonicist any of us knows to her physical location.”

Homeyer continued, describing his trip on Baker’s behalf: “I left Cincinnati at 2:15 a.m. on December 5, 2018 and drove to Frankfort. I got down to Frankfort at around 5 a.m., found the State Medical Examiner’s office, figuring that is where they do the autopsies, and went to the door to see their hours. The door was unlocked, so I went in and tried to find out if [Baker] was there. After a brief chat with the front-desk cop, I realized I was in the right place. I told him I was there on behalf of Danielle Baker to help facilitate her final wishes as an Anatomical Gift Act tissue donor and that I was primarily concerned with making sure brain tissue wasn’t damaged. He said they get started at 8 a.m. and to come back then. Then I went and sat in my car at a gas station five minutes away to wait for a little over two and a half hours. Just before 8 a.m., I returned to the Medical Examiner’s office, and spoke again, to a different cop at the desk. I had the security officer convey by phone to the Medical Examiner’s office that I was there as a volunteer representative of Oregon Cryonics on behalf of Danielle Michelle Baker, an anatomical tissue donor and that my boss Dr. Jordan Sparks would be calling in about an hour to make requests for the handling of the brain during and after the autopsy and the logistics of the release afterwards. I again stressed that of critical importance was that the brain tissue not be damaged.  At that time there weren’t any medical examiners in the office. They took down my number, and told me to check back in a couple of hours if I hadn’t heard from them. I got their fax number and forwarded it and all of the information I had found to [Dr. Sparks]. I then got a hotel nearby and stayed on standby. At 9:26 a.m. [Dr. Sparks] contacted me, told me he was in communication with the Medical Examiner’s office, and said that I didn’t need to go back. I left Frankfort at 5:36pm on December 5, 2018, heading back to Cincinnati, believing I had helped my friend.”

However, despite the efforts of Homeyer and the subsequent efforts of Dr. Jordan Sparks of Oregon Cryonics to advocate for the cryopreservation, Danielle Baker was cremated. Istvan, in his Quartz article of February 22, 2019, wrote that “despite the major parties knowing about the cryonics contract and Document of Gift, Baker’s family pushed for the cremation, which then was carried out by the coroner via a funeral home three days later.”

Homeyer notes that the cremation “was done at the crematory which happens to be co-owned by the coroner who was in charge of her case and in custody of her remains.”

Cryonics advocate Matthew Bryce Deutsch wrote, “Doug Bowling is the coroner, and Baker was cremated at Bowling Funeral home.” Bowling is the Laurel County Coroner in Kentucky, and was re-elected as a Republican for the job in 2018. He is listed as the President of Bowling Funeral home on its website.

Homeyer expressed his view in disapproval of Bowling’s decision to cremate Baker: “Not sure if that’s too much poking the bear… But if he ultimately stands to gain from ignoring her wishes, as an elected official who is supposed to uphold the law, that’s kind of messed up.”

Dr. Jordan Sparks, D.M.D., of Oregon Cryonics explained that “Usually, families don’t object to non-transplant donation, so there is no conflict. In this case, there was disagreement. Funeral directors and coroners are not supposed to be mediators in disputes. It was also an unexpected death, so emotions were very high. I was over 2000 miles away, so I could not be a strong advocate. Things might have been different if we were in the same town. Maybe. At least something like an injunction might have been an option.”

Homeyer expressed his view that he “arrived at the medical examiner’s office on the morning of her scheduled autopsy, in time to prevent damage, but despite this the cremation was carried out.” However, there is disagreement about whether Danielle Baker’s brain was in a sufficiently intact state to enable her memories, personality, and identity to be maintained in some form in the course of the cryopreservation process.

Sparks informed the USTP that “A body that lies undiscovered for three days will never be in good condition.  I think the mind was hopelessly lost by that time. I want to be clear that an [Oregon Cryonics] technician was not able to appear on site.  A volunteer friend showed up and tried to help, but that is very different.  My opinion is that a meaningful preservation can only be performed immediately or within maybe an hour.  At about 6 hours, all the cells are necrotic.  At about 12-24 hours, it becomes impossible to perfuse in all cases, and tissue breakdown is well underway. Because of the already hopeless condition of Danielle’s brain, I don’t believe that Doug Bowling’s actions harmed her.” However, Dr. Sparks also clarified his view that Bowling’s actions were nonetheless “illegal and unethical”. The USTP cannot claim expertise in Kentucky law and so cannot express an opinion on the current legality of Bowling’s behavior, but the USTP holds that legal protections should be established to clearly, unambiguously protect the wishes of cryonics patients, notwithstanding the objections of any other party. The USTP also concurs with Dr. Sparks that cremating an individual against that individual’s express, known wishes is indeed unethical.

Homeyer stated his perspective that “Although I never laid eyes on the body, so I cannot with certainty claim knowledge of her state of decay, as far as I know, Mr. Bowling is not an expert in information-theoretic demise, and nobody currently alive is an expert in the capabilities of future revival technology, therefore his opinion of how well she could have been preserved, seems irrelevant with respect to his ability to carry out what he knew were her final wishes.”

In subsequent communications with the USTP, Istvan commented that “Dr. Sparks here is speaking on matters of the mind. This is not his expertise. And frankly, that’s not for any of us to understand in 2019. We know the research today. But they thought they knew the research in the 1920s with blood tests for murders. What they didn’t know was DNA would overturn the entire field and exonerate many people a century later (as well as ruin many lives unfairly in prison). The point here is we simply cannot know these things, but we do know is Baker had a legit signed contract. And her rights were not followed. And [we know] that a preserved slightly decayed corpse is better than ashes for a person who wanted to come back alive. You have to put yourself in this position and ask what you’d want to be done. I think it’s safe to say: all of us would want the chance to be preserved, whether or not the cryonics process was in optimal conditions.”

The USTP Platform is clear on where we stand in regard to the decision that should have been made in Danielle Baker’s situation. Article III, Section VI, of the USTP Platform, focusing on morphological freedom, reads, in part, that “The United States Transhumanist Party considers morphological freedom to include the prerogative for a sentient intelligence to set forth in advance provisions for how to handle its physical manifestation, should that intelligence enter into a vegetative, unconscious, or similarly inactive state, notwithstanding any legal definition of death. For instance, a cryonics patient should be entitled to determine in advance that the patient’s body shall be cryopreserved and kept under specified conditions, in spite of any legal definition of death that might apply to that patient under cryopreservation.” The concluding paragraph of Section VI also recognizes cryonics as a choice which should “be the purview of [
] individual [sapient] beings, and holds that no other group, individual, or government has the right to limit those choices”. The right to morphological freedom is reiterated in Article X of the Transhumanist Bill of Rights, Version 3.0, with essentially the same language as contained in Article III, Section VI, of the USTP Platform. This principle is a matter on which every cryonics supporter – including Istvan, Sparks, Homeyer, and Deutsch – would also express a fundamental agreement.

As noted above, the USTP takes no position on whether or not Doug Bowling’s actions were in violation of current law; however, we invite our members to consider how applicable laws could be interpreted or improved in order to render the protection of cryonics patients’ wishes unambiguous and incapable of being lawfully abrogated by a third party. The USTP also invites ideas on how to foster improved social acceptance of cryonics so as to at least facilitate its toleration by non-adopters to the same degree that various funeral practices – such as burial, embalming, or cremation – are tolerated today. Members may and will differ in their opinions as to whether Danielle Baker as a person could have been saved even through cryopreservation, and further consideration of this question may be valuable as a theoretical discussion of what cryonics can and what it cannot achieve. Ultimately, though, we have an opportunity to craft a proposal for a “Danielle’s Law” that would protect those cryonicists who do stand a chance to ultimately be revived if their wishes are honored in a sufficiently prompt fashion after legal death.

We encourage you to post your thoughts in the comment thread accompanying this statement.