4 ms·

> The stem cell transplantation is a complicated procedure that comes with many risks, and it is too risky to offer it as a cure for everyone with HIV. Maybe i

by s3p 4y ago

> The stem cell transplantation is a complicated procedure that comes with many risks, and it is too risky to offer it as a cure for everyone with HIV. Maybe it's just me but I hate when people/articles generalize like this. What are the risks? What are the benefits? What is the SPECIFIC hazard to health that is occurring? They just stick to general statements, because, in my opinion, they don't want to do the research. Either way the news itself is good to hear.

vore 4y ago
Stem cell transplantation is usually performed by bone marrow transplant, which is a pretty risky procedure: it involves destroying the recipient's own bone marrow to introduce the donor bone marrow, which can leave the recipient without significant numbers of white blood cells for a while, making them extremely vulnerable to infection. In contrast, HAART for HIV is far less risky and far more safe, allowing people with HIV to live basically a normal life as long as their viral loads stay at undetectable limits.
- torstenvl 4y ago
  That's the received wisdom, but it really seems trite. HAART leaves people extremely vulnerable to infection as well, after all. The difference is that HAART means that point will come at some unpredictable point in the future, whereas a bone marrow transplant makes the window more predictable. And beyond that, it fails to consider the risks of decades of really toxic medication. Is a bone marrow transplant really worse than decades of liver damage followed by developing AIDS eventually anyway? Maybe, maybe not, but dismissing the heavy questions of a persons life with "basically normal" is not helpful.
  - chimeracoder 4y ago
    > HAART leaves people extremely vulnerable to infection as well, after all. The difference is that HAART means that point will come at some unpredictable point in the future, > And beyond that, it fails to consider the risks of decades of really toxic medication. Is a bone marrow transplant really worse than decades of liver damage followed by developing AIDS eventually anyway? This is an outdated and objectively incorrect description of HAART. > but dismissing the heavy questions of a persons life with "basically normal" is not helpful. "Basically normal" is an approximately correct description of the life of most HIV+ people who have easy access to HAART. What's not helpful is responding to that with fearmongering based on incorrect and/or grossly outdated information.
    - torstenvl 4y ago
      Liver damage is a known adverse effect of both emtricitabine and tenofovir, which are extremely common antiretrovirals, an indisputable fact verifiable by anyone on the Internet. There's a difference between fearmongering and informed consent, and I would ask you to refrain both from spreading misinformation and from making personal attacks. Accusing someone of "fearmongering" for pointing out risks you falsely say do not exist is inappropriate.
      - chimeracoder 4y ago
        > Liver damage is a known adverse effect of both emtricitabine and tenofovir, which are extremely common antiretrovirals, an indisputable fact verifiable by anyone on the Internet. Your comment literally claims that long-term HAART carries a significant (or even certain) risk of long-term liver damage, a claim which is baseless and unsupported. You're also conflating acute adverse reactions - which are astronomically rare - with long-term side-effects, when there's no relationship between the two. Not only are tenofovir and emtricitabine safe for the liver, but they are literally commonly prescribed for people who have chronic liver problems because they are so well tolerated. People who can't take Tylenol are able to take them. It's a gross mischaracterization to suggest that they cause "decades of liver damage", a claim which is soundly contradicted by medical literature. > There's a difference between fearmongering and informed consent, and I would ask you to refrain both from spreading misinformation and from making personal attacks. I never made any personal attack at any point. I would, however, flip this request back at you and ask you to stop spreading misinformation, which is what you are clearly doing. > Your insistence on gaslighting does not lend credibility to your other claims. https://news.ycombinator.com/newsguidelines.html https://news.ycombinator.com/newsguidelines.html
        torstenvl 4y ago
        No. It "literally" does not. Read it again. Your comparison to Tylenol is misleading. People aren't required to receive regular liver enzyme tests before being allowed to use Tylenol. Read the guidelines yourself. Accusing people of fearmongering is a personal attack. If you think I'm wrong (and the FDA is wrong) about the risk of liver damage, feel free to present that evidence here (or better yet, to the FDA, so people can have better access to PrEP). Don't make false and ad hominem claims about my motivations.
  - vore 4y ago
    It really is basically normal: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7296391/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7296391/ From 2011 to 2016, overall life expectancy at 21 years of age for individuals with HIV infection who initiated ART at a CD4 cell count of 500/μL or greater was 57.4 years (95% CI, 55.7-59.1 years) and for uninfected adults was 64.2 years (95% CI, 64.0-64.4 years), corresponding to a difference of 6.8 years (95% CI, 5.0-8.5 years) The risk profile for a full bone marrow transplant for treating HIV vs HAART for a difference of ~5-9 years is just not there.
    - torstenvl 4y ago
      > The risk profile for a full bone marrow transplant for treating HIV vs HAART for a difference of ~5-9 years is just not there. According to whom? Who gets to make the choice between 57 years of drugs and stigma versus 64 years of being cured?
      - vore 4y ago
        Of course the patient ultimately decides, but you are really really downplaying the risks of stem cell transplantation: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7202970/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7202970/ Based on their 2010 alloHCT volume, centers were categorized as low-volume (≤40 alloHCTs; N=42 centers, 1,900 recipients) or high-volume (>40 alloHCTs; N=41 centers, 9,637 recipients). 100-day survival was 86% (95% CI, 85–87%) in high-volume compared to 83% (95% CI, 81–85%) in low-volume centers (difference 3%; P<0.001). One-year survival was 62% (95% CI, 61–63%) and 56% (95% CI, 54–58%), respectively (difference 6%; P < 0.001). You are literally getting a coin flip of surviving past 2 years after an allogeneic hematopoietic stem cell transplant. If I was given the choice of HAART and living a mostly normal lifespan, or maybe die with a coin flip chance in 2 years, I would pick HAART, no contest.
        chimeracoder 4y ago
        > You are literally getting a coin flip of surviving past 2 years after an allogeneic hematopoietic stem cell transplant. If I was given the choice of HAART and living a mostly normal lifespan, or maybe die with a coin flip chance in 2 years, I would pick HAART, no contest. Not to mention that the "64 years" comparison is not the correct reference point here, because it's talking about people who were never infected with HIV in the first place, not people who have received a stem cell transplant. The stem cell transplant almost certainly reduces both your lifespan and QALS in the long term, not just the first two years. Yes, it might be worth it if you have cancer, but it's not like it suddenly makes you clinically equivalent to a person who has never had HIV!
cfrantz2 4y ago
The article also does not mention the type of transplant: autologous or allogeneic. As a recipient of an auto-transplant as part of cancer treatment, I perhaps can speak to the complexity of the procedure and the risks. For certain types of lymphomas, the best chance for life-long remission is through a stem-cell transplant. - The patient first undergoes conventional chemotherapy to attempt to achieve remission. - The patient then performs a barrage of tests to ensure that they are healthy enough to withstand the transplant procedure. - The patient has a Hickman catheter installed. The catheter is a device with tube into the superior vena cava (one of the main return veins into the heart) and two external ports for drawing and returning blood and administering fluids and drugs. - The patient performs mobilization and collection. During mobilization, the patient self-injects a growth factor drug that causes the body to produce extra hematopoietic stem cells and release them into the blood stream. During collection, the patient is connected to a centrifuge machine and the stem cells are collected and preserved. - The patient enters the hospital for the transplant procedure. High dose chemotherapy is administered. For cancer treatment, the purpose of the chemotherapy is to destroy any cancer cells remaining in the body. Even though the patient may be in remission from first-line chemo, some cancers can return from just a few remaining cancer cells. A side-effect of the high-dose chemotherapy is the destruction of the body's ability to produce blood. - After chemotherapy, the patient's own stem cells are injected. Within 7 to 10 days, these cells will recolonize the bone marrow, "engraft" and begin producing blood. - Once the patient's blood cell counts are on the rise and the patient is otherwise stable, he is sent home. The patient typically needs live-in care at home for about 30 days (the patient's blood counts are still very low and a normally trivial injury from cooking or cleaning could be deadly). The risks of the procedure are from the high-dose chemotherapy and the fragile state of the immune system after the transplant. After a transplant, _all_ immune memory is erased and the patient is as a newborn as far as immune system capability is concerned. The risks include: - Chemo related organ damage to heart, lungs, kidneys and liver. - Chemo-induced pneumonitis. - Graft failure (e.g. failure of the stem cells to recolonize the bone marrow). - Infection (since the immune system is destroyed during the process, a normally minor infection can be deadly). According to my transplant doctor, the auto-transplant process has about a 2% risk of death. The benefits are that the probability of a cancer relapse is significantly reduced (say 90% risk to 50% risk). For the patient, the process is very difficult and recovery time is approximately one year. (edited for formatting)

by s3p 4y ago

vore 4y ago

Stem cell transplantation is usually performed by bone marrow transplant, which is a pretty risky procedure: it involves destroying the recipient's own bone marrow to introduce the donor bone marrow, which can leave the recipient without significant numbers of white blood cells for a while, making them extremely vulnerable to infection. In contrast, HAART for HIV is far less risky and far more safe, allowing people with HIV to live basically a normal life as long as their viral loads stay at undetectable limits.

torstenvl 4y ago
That's the received wisdom, but it really seems trite. HAART leaves people extremely vulnerable to infection as well, after all. The difference is that HAART means that point will come at some unpredictable point in the future, whereas a bone marrow transplant makes the window more predictable. And beyond that, it fails to consider the risks of decades of really toxic medication. Is a bone marrow transplant really worse than decades of liver damage followed by developing AIDS eventually anyway? Maybe, maybe not, but dismissing the heavy questions of a persons life with "basically normal" is not helpful.
- chimeracoder 4y ago
  > HAART leaves people extremely vulnerable to infection as well, after all. The difference is that HAART means that point will come at some unpredictable point in the future, > And beyond that, it fails to consider the risks of decades of really toxic medication. Is a bone marrow transplant really worse than decades of liver damage followed by developing AIDS eventually anyway? This is an outdated and objectively incorrect description of HAART. > but dismissing the heavy questions of a persons life with "basically normal" is not helpful. "Basically normal" is an approximately correct description of the life of most HIV+ people who have easy access to HAART. What's not helpful is responding to that with fearmongering based on incorrect and/or grossly outdated information.
  - torstenvl 4y ago
    Liver damage is a known adverse effect of both emtricitabine and tenofovir, which are extremely common antiretrovirals, an indisputable fact verifiable by anyone on the Internet. There's a difference between fearmongering and informed consent, and I would ask you to refrain both from spreading misinformation and from making personal attacks. Accusing someone of "fearmongering" for pointing out risks you falsely say do not exist is inappropriate.
    - chimeracoder 4y ago
      > Liver damage is a known adverse effect of both emtricitabine and tenofovir, which are extremely common antiretrovirals, an indisputable fact verifiable by anyone on the Internet. Your comment literally claims that long-term HAART carries a significant (or even certain) risk of long-term liver damage, a claim which is baseless and unsupported. You're also conflating acute adverse reactions - which are astronomically rare - with long-term side-effects, when there's no relationship between the two. Not only are tenofovir and emtricitabine safe for the liver, but they are literally commonly prescribed for people who have chronic liver problems because they are so well tolerated. People who can't take Tylenol are able to take them. It's a gross mischaracterization to suggest that they cause "decades of liver damage", a claim which is soundly contradicted by medical literature. > There's a difference between fearmongering and informed consent, and I would ask you to refrain both from spreading misinformation and from making personal attacks. I never made any personal attack at any point. I would, however, flip this request back at you and ask you to stop spreading misinformation, which is what you are clearly doing. > Your insistence on gaslighting does not lend credibility to your other claims. https://news.ycombinator.com/newsguidelines.html https://news.ycombinator.com/newsguidelines.html
      - torstenvl 4y ago
        No. It "literally" does not. Read it again. Your comparison to Tylenol is misleading. People aren't required to receive regular liver enzyme tests before being allowed to use Tylenol. Read the guidelines yourself. Accusing people of fearmongering is a personal attack. If you think I'm wrong (and the FDA is wrong) about the risk of liver damage, feel free to present that evidence here (or better yet, to the FDA, so people can have better access to PrEP). Don't make false and ad hominem claims about my motivations.
- vore 4y ago
  It really is basically normal: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7296391/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7296391/ From 2011 to 2016, overall life expectancy at 21 years of age for individuals with HIV infection who initiated ART at a CD4 cell count of 500/μL or greater was 57.4 years (95% CI, 55.7-59.1 years) and for uninfected adults was 64.2 years (95% CI, 64.0-64.4 years), corresponding to a difference of 6.8 years (95% CI, 5.0-8.5 years) The risk profile for a full bone marrow transplant for treating HIV vs HAART for a difference of ~5-9 years is just not there.
  - torstenvl 4y ago
    > The risk profile for a full bone marrow transplant for treating HIV vs HAART for a difference of ~5-9 years is just not there. According to whom? Who gets to make the choice between 57 years of drugs and stigma versus 64 years of being cured?
    - vore 4y ago
      Of course the patient ultimately decides, but you are really really downplaying the risks of stem cell transplantation: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7202970/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7202970/ Based on their 2010 alloHCT volume, centers were categorized as low-volume (≤40 alloHCTs; N=42 centers, 1,900 recipients) or high-volume (>40 alloHCTs; N=41 centers, 9,637 recipients). 100-day survival was 86% (95% CI, 85–87%) in high-volume compared to 83% (95% CI, 81–85%) in low-volume centers (difference 3%; P<0.001). One-year survival was 62% (95% CI, 61–63%) and 56% (95% CI, 54–58%), respectively (difference 6%; P < 0.001). You are literally getting a coin flip of surviving past 2 years after an allogeneic hematopoietic stem cell transplant. If I was given the choice of HAART and living a mostly normal lifespan, or maybe die with a coin flip chance in 2 years, I would pick HAART, no contest.
      - chimeracoder 4y ago
        > You are literally getting a coin flip of surviving past 2 years after an allogeneic hematopoietic stem cell transplant. If I was given the choice of HAART and living a mostly normal lifespan, or maybe die with a coin flip chance in 2 years, I would pick HAART, no contest. Not to mention that the "64 years" comparison is not the correct reference point here, because it's talking about people who were never infected with HIV in the first place, not people who have received a stem cell transplant. The stem cell transplant almost certainly reduces both your lifespan and QALS in the long term, not just the first two years. Yes, it might be worth it if you have cancer, but it's not like it suddenly makes you clinically equivalent to a person who has never had HIV!

cfrantz2 4y ago

The article also does not mention the type of transplant: autologous or allogeneic. As a recipient of an auto-transplant as part of cancer treatment, I perhaps can speak to the complexity of the procedure and the risks. For certain types of lymphomas, the best chance for life-long remission is through a stem-cell transplant. - The patient first undergoes conventional chemotherapy to attempt to achieve remission. - The patient then performs a barrage of tests to ensure that they are healthy enough to withstand the transplant procedure. - The patient has a Hickman catheter installed. The catheter is a device with tube into the superior vena cava (one of the main return veins into the heart) and two external ports for drawing and returning blood and administering fluids and drugs. - The patient performs mobilization and collection. During mobilization, the patient self-injects a growth factor drug that causes the body to produce extra hematopoietic stem cells and release them into the blood stream. During collection, the patient is connected to a centrifuge machine and the stem cells are collected and preserved. - The patient enters the hospital for the transplant procedure. High dose chemotherapy is administered. For cancer treatment, the purpose of the chemotherapy is to destroy any cancer cells remaining in the body. Even though the patient may be in remission from first-line chemo, some cancers can return from just a few remaining cancer cells. A side-effect of the high-dose chemotherapy is the destruction of the body's ability to produce blood. - After chemotherapy, the patient's own stem cells are injected. Within 7 to 10 days, these cells will recolonize the bone marrow, "engraft" and begin producing blood. - Once the patient's blood cell counts are on the rise and the patient is otherwise stable, he is sent home. The patient typically needs live-in care at home for about 30 days (the patient's blood counts are still very low and a normally trivial injury from cooking or cleaning could be deadly). The risks of the procedure are from the high-dose chemotherapy and the fragile state of the immune system after the transplant. After a transplant, _all_ immune memory is erased and the patient is as a newborn as far as immune system capability is concerned. The risks include: - Chemo related organ damage to heart, lungs, kidneys and liver. - Chemo-induced pneumonitis. - Graft failure (e.g. failure of the stem cells to recolonize the bone marrow). - Infection (since the immune system is destroyed during the process, a normally minor infection can be deadly). According to my transplant doctor, the auto-transplant process has about a 2% risk of death. The benefits are that the probability of a cancer relapse is significantly reduced (say 90% risk to 50% risk). For the patient, the process is very difficult and recovery time is approximately one year. (edited for formatting)