If you think saving other people’s lives on a regular basis sounds kind of cool, then have I got a deal for you! Read on to find out how you can be a superhero without breaking a sweat.
I have donated gallons of blood. I have donated stem cells to help save the life of a child with leukemia. I am a registered organ donor. I am currently participating in a yellow fever vaccine trial and an experimental HIV vaccine study. None of this should be remarkable, and yet apparently it is. I’m asking you to please help change that.
When people ask me why I do all this, my response is usually this: someone needs to do it, and why shouldn’t that someone be me? What excuse do I have not to do something through which, for the price of some time and brief discomfort, I can literally save other people’s lives?
If you like the sound of that, then read on to find out what I’m talking about and how you can get in on the action. In increasing order of difficulty…
But first, a disclaimer…
I need to offer the following disclaimer up-front.
It’s not possible for everyone to do these things. Some of the reasons why some people can’t do these things are unjust and stem from discrimination and bigotry.
If you can’t be a donor for whatever reason, then I do not intend through what I’ve written here to attack or belittle you in any way. You need to make the decisions that are best for you.
If you can’t be a donor because our society unjustly denies you the opportunity, then please believe me when I say that I sympathize with you, I hope that changes soon, and I do think there is light at the end of that tunnel.
We now return you to our regularly scheduled program, already in progress…
Be an organ donor
As powerful and advanced as medicine has become in the modern age, there are still conditions which can only be treated by taking part of one person and putting into another. Doctors can transplant kidneys, livers, hearts, corneas, valves, lungs, intestines, skin, hands, and even faces. With a few exceptions (thank you to all the live donors out there!), transplanted organs can only come from people who have died, for obvious reasons. Furthermore, we only transplant organs from people who have consented to it before their deaths. Most people don’t. As a result the demand for transplant organs far exceeds the supply, and people suffer and die every day for lack of a transplant.
I hope to live such a long life that when I die my organs will be worn out and no use to anyone else. But I also know that some people die before their time, that none of us can guarantee we won’t be one of them, and that when I’m dead I won’t care about what happens to my organs, because I’ll be dead. If I can do something now which has the potential to save multiple people’s lives after I’m gone without costing me anything, then heck yeah, I want in on that action. If you do too, then click here (United States) to find out how. Outside the United States, search for “organ donor” in your native language plus the name of your country.
Look at it this way: if you get sick and need a transplant, do you want to be the one stuck on a waiting list because there aren’t enough people donating their organs? Be part of the solution. Pay it forward in advance.
Register as a stem-cell donor
There are numerous deadly diseases whose treatment requires a bone-marrow transplant: the patient’s bone marrow is destroyed via a combination of radiation and chemotherapy, and then bone-marrow stem cells from a donor are transplanted into the patient, where they take root inside the patient’s bones and grow into new, healthy bone marrow. Without a bone-marrow transplant, these patients will die.
While all organ donations require at least some level of genetic compatibility between the donor and recipient, bone-marrow transplants are particularly sensitive to it. When you sign up as a potential stem-cell donor, a saliva sample swabbed from your cheek is analyzed for a small number of relevant genetic markers, which are then stored along with your name and contact information in a database which doctors can search when they are trying to find a donor for a particular patient. Your privacy is protected both because only a few genetic markers are stored and because the doctors who search the database only have access to de-identified data. If they find a potential match, the organization that maintains the database mediates contact with you, and when they reach out you can decline to participate for any reason.
Full disclosure: while I said above that I was going to list these in increasing order of difficulty, when it comes to stem-cell donation, it’s complicated. You could register in a stem-cell database and then never come up as a match for anyone for the rest of your life. If so, then you did a good deed and all it cost you was a cheek swab, less painful then even a rapid COVID test. However, if you do later get matched to a patient, and you end up deciding to donate, things get more complicated.
Generally speaking, there are two ways you can donate stem cells:
- Doctors give you injections for a few weeks to stimulate excess production of stem cells by your bone marrow, and then they hook you up to a machine for a few hours, generally via a needle in one arm and a flexible catheter in the other, and run your blood through an “apheresis” machine which extracts stem cells and gives back everything else.
- Doctors literally extract bone marrow from your body by sticking a thick needle into your thigh bone numerous times (while you’re numbed, of course!) to grabbing marrow cells from inside the bone.
The needle-in-the-thigh approach is somewhat more painful and has a longer recovery time. On the other hand, it requires a lot fewer visits to the hospital.
In either case, any expenses you incur, e.g., for parking during appointments or travel costs to get to the hospital if there’s no cancer center near where you live, are fully paid for. Furthermore, although complications from these procedures are extremely unlikely, treatment for any complications you experience is fully paid for as well. Note, however, that if you lose wages as a result of missed work during the donation process, that probably won’t be reimbursed (at least not in the United States).
When you register as a potential stem-cell donor, you’re not agreeing to donate, you’re just agreeing to consider it if you match a patient in the future. Furthermore, although the patient’s doctor will determine which donation method they think will better benefit the patient, you have the right to decline either if you’re not comfortable with it. You will have the opportunity for fully informed consent—the procedure will be explained to you in detail, and any questions you have about it will be completely answered—before deciding whether to participate.
Note that because stem cell transplants from older donors have been found to be less successful, generally speaking donors are only accepted between the ages of 18 and 40.
Please click here (United States) to find out more about registering as a stem-cell donor. Outside the United States, search for “stem cell registry” plus the name of your country to find out how to register.
Donate blood or platelets
To donate blood or platelets, you visit a blood drive, a commercial blood donor center (where they will pay you!), or a blood donor center at a hospital.
If you donate one unit of blood (a “normal” blood donation, but see below), they stick a needle in the vein of one of your arms with a tube attached to it, and your body’s normal circulation will gradually push a pint of blood through the tube into the bag at the end of it where the donation is collected, which takes about a half hour. Your blood blood is then tested, processed, used to treat multiple patients. The needle hurts a bit going on, and you may be a bit sore for a few days, and you may be a little more tired than usual and have a little less endurance for a few weeks while your blood regenerates. If you aren’t a performance athlete, you probably won’t notice or care. You can donate blood this way once every eight weeks.
If you donate platelets, they stick a needle in each arm, connected to an apheresis machine which extracts platelets and some plasma and gives back everything else. The likely potential complications are as above. Different donor centers have different frequency limits, but generally speaking you can donate platelets around once every two weeks, though not if you’ve donated blood within the past eight (or 16, see below) weeks. Platelets have a usable shelf-life of only 5-7 days, so there is a constant, ongoing need for platelet donations to treat the conditions which require them.
Some donor centers also accept double-red-cell, a.k.a. 2RBC, donations. They use an apheresis machine to take two units worth of red blood cells but return the plasma to your body along with saline solution equivalent in volume to the red blood cells. Pros: you won’t feel as tired immediately after the donation, and you can do your duty with half as many visits (you can only donate 2RBC every 16 weeks). Cons: it takes a bit longer than a regular donation, and it takes longer for your body to get back up to full speed because it has to regenerate more red blood cells.
Three informational notes for people who aren’t experienced donors:
- If you live near a hospital with a donor center, that’s the best place to donate in terms of how much your donation will help people.
- Make sure to drink at least two liters of water each of the three days prior to donating, and avoid drinking caffeine within 12 hours of donating. Both of these will make it easier and less painful for the nurses to get the needle into your vein and will make you feel better after donating.
- If you start donating blood regularly, alternate arms when donating, because if you use the same arm every time, the vein there will become more scarred over time and harder to get a needle into with no pain.
Be a clinical research subject
Every single medical advance in history has at some point required clinical research with human test subjects.
It’s important to note that in the past, medical research was often performed without the consent of the subject and often resulted in suffering or death. Some of the most infamously barbaric and inhumane incidents in human history (Josef Mengele, Tuskegee syphilis study) fell into this category, often at the expense of oppressed minorities.
Fortunately, for the most part those days are behind us. Essentially every country in the world has an extremely high bar for clinical research with human subjects, requires informed consent for all participants, and requires participants to be able to withdraw their consent at any time for any reason. It has never been safer to participate in clinical research for the benefit of society.
There are all sorts of clinical trials, but since personal stories are often more illuminating than generalized overviews, let me tell you about the two that I’m currently participating in.
Yellow fever vaccine stage 3 trial
Yellow fever is a serious problem in much of the world. There are vaccines for it, but the process for manufacturing them is somewhat outdated. One of the companies which manufactures yellow fever vaccines is trying to switch to a modern, mRNA vaccine platform, similar to the several of the COVID vaccines. I am a participant in a stage 3 trial of this vaccine, in which half of the subjects receive the current, approved vaccine, the other half receive the trial vaccine, and the study measures the yellow fever immunity in all subjects for several years after vaccination (yellow fever immunity generally lasts for life once you catch it or are immunized for it).
A stage 3 trial evaluates efficacy, i.e., does the treatment do what it is supposed to do? Some stage 3 trials compare the novel treatment with a placebo; the trial I’m in is somewhat unusual in that the control group isn’t a placebo, but is rather the existing yellow fever vaccine, to which the new vaccine needs to be comparable in effectiveness to gain approval.
I received the vaccination from the trial over a year ago, for which I felt essentially no side effects whatsoever, and I believe I have one or two more annual appointments with the people running the study where they will take a blood sample and test my immunity. When the study is done I will be told whether I received the old or new vaccine. If I received the old vaccine I will receive a certificate I can use to prove I was vaccinated when traveling to the countries which require it (which, frankly, I personally probably will never do, but perhaps some participants will). If I received the new vaccine then I will receive such a certificate only if it ends up being approved for use as a result of this study. My expenses (e.g., parking) for each study visit are reimbursed, and I am paid $50 for each visit to compensate me for my time. In total I think I’ll be paid a few hundred dollars for this study over several years.
HIV/AIDS experimental vaccine study
The HIV/AIDS epidemic started over 40 years ago, and while we have prophylactic treatments which reduce the likelihood of catching HIV and treatments for HIV+ individuals which allow them to lead long, active lives, we don’t have a universal vaccine, and the treatments we do have are not accessible world-wide. Hundreds of thousands of people die of AIDS every year world-wide.
HIV is an incredibly clever virus (as a doctor working on the study I’m in put it, “There is more genetic diversity in HIV in Boston than there is in COVID in the entire world”), and after 40+ years of research, immunologists still aren’t close to a universal vaccine. The study I’m participating in isn’t expected to result in a universal vaccine; it’s expected to give the scientists conducting the study a little bit more knowledge about what works and what doesn’t, to move the needle a little bit closer to a universal vaccine.
Even if the study “fails” in the sense of not producing the desired immune response in participants, it will still benefit scientists by giving them more data points about what doesn’t work.
This is a stage 1 trial. Some of the components of the vaccine I’ll be receiving haven’t been used in humans before; others have been used before but not in this exact configuration. Unanticipated side effects are possible but extremely unlikely.
There are two anticipated side effects of this particular trial that are worth noting:
- Although it’s 100% impossible for the study vaccine to give me HIV, it may cause me to falsely test positive on the blood tests generally used to test for HIV. If I need an HIV test for any reason in the future, I’m supposed to have it done at the study lab, because they know how to distinguish the true from false positives in people who have had vaccines such as this one. This means, incidentally, that I certainly can’t donate blood for the duration of the study, and I may not be able to donate blood forever (!!) afterward.
- Study participants may find that they face some stigma as a result of participating in an HIV vaccine study. I obviously am not particularly concerned about this or I wouldn’t be writing about it publicly like this, but I imagine some people whose life circumstances differ from mine might have more to worry about.
I was fully informed about these and other potential side effects before consenting to participate in the study.
I have visited the hospital three times so far for this study.
- I underwent a brief physical exam and an interview to confirm my eligibility.
- I was fully informed by a study by one of the doctors running it and formally consented to participate (but remember, I can withdraw my consent at any time!).
- I underwent a leukapheresis procedure in which a small amount of white blood cells were removed from my blood, to be analyzed to establish a baseline of my immunity pre-vaccination.
My next visit will be to receive the vaccination. After that I will visit the hospital approximately monthly for the following year, mostly for blood tests but once for a second leukapheresis procedure, and then once more six months after the end of the year; after that, I may need to keep visiting periodically to get tested to see if I still have antibodies (i.e., can I start donating blood again?). My expenses will be reimbursed and I will be compensated anywhere from $50 to $150 per visit, depending on the length of the visit. If I recall correctly, the total compensation for the entire study will be $1,150 (I can’t say for certain if that’s the correct number because, honestly, the compensation is not top of mind for why I agreed to participate).
Given my lifestyle, my risk of contracting HIV is about as close to 0% as it can get. This study was specifically looking for low-risk people like me, because it’s an extremely small study (about 53 people world-wide, and I believe I’m one of the first to receive my vaccine), so losing even one participant will meaningfully impact the results, and having a participant contract HIV during the study would invalidate their results for obvious reasons.
I’m not participating in this study for my own benefit. I’m participating in it to benefit society by bringing us closer to finding a universal HIV vaccine.
How to participate in clinical trials
- Many teaching/research hospitals have clinical trial units. If you live near a teaching hospital, look up clinical trials on their website or call them and ask. [example]
- Ditto for medical schools. [example]
- Search for clinical trials near you at ClinicalTrials.gov (world-wide clinical trial database).
- Register at ResearchMatch.org (U.S. only).
