Acute liver failure - insurance and information
February 2, 2020 6:14 AM Subscribe
A relative has just been hospitalized with acute liver failure. They live in a rural state with no transplant center, their insurance does not cover out of state care and they will need to plead urgency to a transplant board in any case. Who can advise me about insurance and their condition?
My relative has insurance through work but that insurance only covers in-state care. They should almost certainly be seen at a transplant center ASAP but cannot be moved due to insurance. (Their day to day condition is stable in the short/medium term; they are currently hospitalized. The hospital will airlift them to a transplant center in an emergency, but we obviously don't want to wait around for months until their condition crashes.)
What can we do? They are in a Medicaid expansion state - would quitting their job be a qualifying event for the ACA? Their job would also lay them off if this would help.
Most transplant boards require insurance/ability to pay before they will okay a transplant.
My relative has a health issue which has meant that moderate drinking has unexpectedly tanked their liver very young. They have been given relatively low odds of living through the six months of sobriety required by many transplant boards before qualifying for a new liver, but relatively good odds of a successful appeal of this requirement to a board due to other factors.
How can I find out more about specific transplant hospitals, boards, etc?
I also feel that I don't understand their condition and its treatment very well - obviously I've googled and looked at PubMed, but that doesn't tell you much about the lived reality. How can I find better information for patients and families?
Do you have any other advice?
My relative has insurance through work but that insurance only covers in-state care. They should almost certainly be seen at a transplant center ASAP but cannot be moved due to insurance. (Their day to day condition is stable in the short/medium term; they are currently hospitalized. The hospital will airlift them to a transplant center in an emergency, but we obviously don't want to wait around for months until their condition crashes.)
What can we do? They are in a Medicaid expansion state - would quitting their job be a qualifying event for the ACA? Their job would also lay them off if this would help.
Most transplant boards require insurance/ability to pay before they will okay a transplant.
My relative has a health issue which has meant that moderate drinking has unexpectedly tanked their liver very young. They have been given relatively low odds of living through the six months of sobriety required by many transplant boards before qualifying for a new liver, but relatively good odds of a successful appeal of this requirement to a board due to other factors.
How can I find out more about specific transplant hospitals, boards, etc?
I also feel that I don't understand their condition and its treatment very well - obviously I've googled and looked at PubMed, but that doesn't tell you much about the lived reality. How can I find better information for patients and families?
Do you have any other advice?
Have you talked to the hospital social worker where they currently is about navigating these issues? That person should be helping you set up a feasible discharge plan, and part of that is helping you have a place to recieve follow up care in your insurance network.
posted by AlexiaSky at 6:50 AM on February 2, 2020 [1 favorite]
posted by AlexiaSky at 6:50 AM on February 2, 2020 [1 favorite]
Sorry for three posts in a row.
He also may qualify for something called presumptive disability which would grant him SSI/or SSDI pand medicaid in 30 days or so with the correct paperwork. That may be another route to look into.
Presumptive disability has a list of qualifying conditions some serious things are on there some aren't, I'm not sure if this condition would be but it's worth looking into.
posted by AlexiaSky at 6:56 AM on February 2, 2020 [1 favorite]
He also may qualify for something called presumptive disability which would grant him SSI/or SSDI pand medicaid in 30 days or so with the correct paperwork. That may be another route to look into.
Presumptive disability has a list of qualifying conditions some serious things are on there some aren't, I'm not sure if this condition would be but it's worth looking into.
posted by AlexiaSky at 6:56 AM on February 2, 2020 [1 favorite]
I've worked with liver transplant programs, but not on the financial side.
Keep in mind that the primary focus of transplant programs is to transplant patients who will succeed and be alive a year after transplant. Programs are rated on their statistics, the most important of these being how many patients are alive one year after transplant. These statistics affect their ability to remain accredited, not just a PR metric, so these are taken very seriously. A person "needing" a liver is not enough. There are too few livers available and too many potential recipients to loosen the criteria.
They will not transplant patients who are too sick to be successfully transplanted, who do not have insurance (Medicaid is usually OK. There is a lot of ongoing medical care and essential medications after transplant. Patients will not be transplanted if they cannot pay for aftercare. Social workers and financial/insurance staff are as important as the medical people when deciding who to transplant, and have an equal veto with the docs.) They will not transplant people who do not have strong social support, a spouse, parents or other deeply attached person to support the patient and to be there after the transplant.
The alcohol issue is important, but the mandatory sobriety period can sometimes be adjusted by the transplant program. Each program has its own standards for these kind of issues, and they can be negotiated among the transplant team. Some programs will not transplant tobacco users. Period. Some will not allow even medical marijuana, others not as worried about it. What is important to know is that each program has discretion to possibly take a chance on a person with acute liver failure from alcohol, and others will not. However the insurance issue is not negotiable. No program will transplant someone who is essentially not insured to have surgery and essential medical care without a guarantee of payment.
I have also seen cases where a person with acute alcoholic liver failure stops drinking and over a period of time when he or she is being evaluated by the program the liver heals itself so much that the person no longer needs a transplant. Not often, but it has happened.
posted by citygirl at 7:44 AM on February 2, 2020 [3 favorites]
Keep in mind that the primary focus of transplant programs is to transplant patients who will succeed and be alive a year after transplant. Programs are rated on their statistics, the most important of these being how many patients are alive one year after transplant. These statistics affect their ability to remain accredited, not just a PR metric, so these are taken very seriously. A person "needing" a liver is not enough. There are too few livers available and too many potential recipients to loosen the criteria.
They will not transplant patients who are too sick to be successfully transplanted, who do not have insurance (Medicaid is usually OK. There is a lot of ongoing medical care and essential medications after transplant. Patients will not be transplanted if they cannot pay for aftercare. Social workers and financial/insurance staff are as important as the medical people when deciding who to transplant, and have an equal veto with the docs.) They will not transplant people who do not have strong social support, a spouse, parents or other deeply attached person to support the patient and to be there after the transplant.
The alcohol issue is important, but the mandatory sobriety period can sometimes be adjusted by the transplant program. Each program has its own standards for these kind of issues, and they can be negotiated among the transplant team. Some programs will not transplant tobacco users. Period. Some will not allow even medical marijuana, others not as worried about it. What is important to know is that each program has discretion to possibly take a chance on a person with acute liver failure from alcohol, and others will not. However the insurance issue is not negotiable. No program will transplant someone who is essentially not insured to have surgery and essential medical care without a guarantee of payment.
I have also seen cases where a person with acute alcoholic liver failure stops drinking and over a period of time when he or she is being evaluated by the program the liver heals itself so much that the person no longer needs a transplant. Not often, but it has happened.
posted by citygirl at 7:44 AM on February 2, 2020 [3 favorites]
Appling for SSIv terminal illness program (TERI)
SSA info
Here is information on another SSI application route.
posted by AlexiaSky at 7:50 AM on February 2, 2020 [1 favorite]
SSA info
Here is information on another SSI application route.
posted by AlexiaSky at 7:50 AM on February 2, 2020 [1 favorite]
Some good news: acute on chronic liver failure (it sounds like you are describing unrecognized chronic liver disease with acute presentation and not an acute hepatitis / drug induced liver failure) without other failed organs (e.g. kidney failure, ventilator, vasopressors), infection, or a history of decompensation has a reasonably good rate of stabilization and even long term survival. As the number of any of those goes up, so does mortality in the short and medium term. A surprisingly large fraction of patients at their first liver decompensation don't need a liver transplant and are better off not getting one right away if their liver can give them 5-10 more years. The hepatologist treating your relative should be able to explain; try to set up a dedicated family meeting time since grabbing them on hospital rounds is less successful in most hospitals. If the hospital they are at doesn't have a hepatologist, then they need to be referred out ASAP.
I'm sorry that I can't really help with insurance issues. It's kind of impossible to know without your state and other details. In addition to the hospital financial person, see if the hepatologists will offer you a referral to a transplant center that's out of state just so that you can start working on the things they will need while the out of state coverage is worked on. For example, the local team can usually do the imaging, laboratory studies, exclusion screenings (like a colonoscopy or mamogram), and cardiac diagnostics if any are still needed. The transplant center will have a financial person who can help you navigate and will likely know more about the specifics of this than the one at your hospital. I have seen people do extreme things to qualify for medicaid (like getting divorced), but that's not something to consider without expert and legal assistance. Inability to afford post-transplant care is a common and embarrassing-for-our-civilization cause of not being eligible.
Choosing a transplant center is tough. Raw survival can be a little misleading because some small centers will only do "easy" cases. The risk-adjusted models available are really primitive. Access to a donor organ is driven by the score of the person and the supply-demand in that geography, so for example MELD at transplant in California is very high compared to the midwest. However, the transplant surgeons at some (again, usually smaller) centers are pickier about the donor causing them to pass on organs. Many centers don't use donation after circulatory death, which can be a good way for a more resilient person to get off the waitlist. Only a few centers in the US have enough experience with adult-to-adult living donation to do it safely, if there is a matched willing donor. People also often consider just how far they'll have to travel since it's usual to spend the (pretty difficult for some patients) first couple of months nearby, and the recipient will need help from family. Your hepatologist can tell you where they usually refer, your insurer (or new insurer) may have some preferred place for illnesses with no in-state treatment. You can also look at the scientific registry of transplant recipients to preview these factors; they have a lot of helpful information.
Again, I can't say much about the drinking history. In patients with a cause of cirrhosis other than alcoholism most centers will give you a pass on the 6 months sober, since there is very little research to support it. For example, if your relative had Wilson's disease and didn't know. Don't be surprised if questions are very invasive or some centers say "no"; many alcoholics are very good at hiding it from family and relapse to drinking is a death sentence (and a statistical person dies on the waitlist who could have received the organ). Very young people are higher risk for relapse and have often been harder drinking for a shorter time than older alcoholics. The center should be able to tell you up-front if 6-months sober is a hard requirement. As I said above, your relative may have a pretty good shot at making 6 months depending on how bad their disease is.
posted by a robot made out of meat at 10:40 AM on February 2, 2020 [2 favorites]
I'm sorry that I can't really help with insurance issues. It's kind of impossible to know without your state and other details. In addition to the hospital financial person, see if the hepatologists will offer you a referral to a transplant center that's out of state just so that you can start working on the things they will need while the out of state coverage is worked on. For example, the local team can usually do the imaging, laboratory studies, exclusion screenings (like a colonoscopy or mamogram), and cardiac diagnostics if any are still needed. The transplant center will have a financial person who can help you navigate and will likely know more about the specifics of this than the one at your hospital. I have seen people do extreme things to qualify for medicaid (like getting divorced), but that's not something to consider without expert and legal assistance. Inability to afford post-transplant care is a common and embarrassing-for-our-civilization cause of not being eligible.
Choosing a transplant center is tough. Raw survival can be a little misleading because some small centers will only do "easy" cases. The risk-adjusted models available are really primitive. Access to a donor organ is driven by the score of the person and the supply-demand in that geography, so for example MELD at transplant in California is very high compared to the midwest. However, the transplant surgeons at some (again, usually smaller) centers are pickier about the donor causing them to pass on organs. Many centers don't use donation after circulatory death, which can be a good way for a more resilient person to get off the waitlist. Only a few centers in the US have enough experience with adult-to-adult living donation to do it safely, if there is a matched willing donor. People also often consider just how far they'll have to travel since it's usual to spend the (pretty difficult for some patients) first couple of months nearby, and the recipient will need help from family. Your hepatologist can tell you where they usually refer, your insurer (or new insurer) may have some preferred place for illnesses with no in-state treatment. You can also look at the scientific registry of transplant recipients to preview these factors; they have a lot of helpful information.
Again, I can't say much about the drinking history. In patients with a cause of cirrhosis other than alcoholism most centers will give you a pass on the 6 months sober, since there is very little research to support it. For example, if your relative had Wilson's disease and didn't know. Don't be surprised if questions are very invasive or some centers say "no"; many alcoholics are very good at hiding it from family and relapse to drinking is a death sentence (and a statistical person dies on the waitlist who could have received the organ). Very young people are higher risk for relapse and have often been harder drinking for a shorter time than older alcoholics. The center should be able to tell you up-front if 6-months sober is a hard requirement. As I said above, your relative may have a pretty good shot at making 6 months depending on how bad their disease is.
posted by a robot made out of meat at 10:40 AM on February 2, 2020 [2 favorites]
You should see if your state AG has a health care or insurance bureau to help you if insurance is recalcitrant. Have you actually had pre-authorization denied already? Because, as AlexiaSky says, ordinarily, if the standard treatment is simply not available in-network, insurance will cover out-of-network. The present administration has been gutting basic requirements for insurance plans, but I still wouldn't make assumptions about coverage until I'd actually gotten an answer in writing from the insurance company.
posted by praemunire at 10:52 AM on February 2, 2020
posted by praemunire at 10:52 AM on February 2, 2020
The MeFi Wiki ThereIsHelp page has a list of resources for Help with Health Insurance, including:
posted by katra at 11:34 AM on February 2, 2020
In the United States, according to the National Academy of State Health Policy, as states transform their health systems, many are turning to Community Health Workers (CHWs) to facilitate care coordination and enhance access to community-based services. While state definitions vary, CHWs are typically frontline workers with an understanding of the communities they serve.You may also want to Get a Lawyer (MeFi Wiki), specifically for questions related to SSDI and related insurance coverage.
To find a Community Health Worker (CHW) to help with health insurance, you can search the National Provider Identifier Database for Community Health Workers. Another option is to google the name of your state and "Community Health Worker," to help ensure access to the most updated information in your area. Links to local organizations may also be found at the National Academy of State Health Policy website by clicking on the "Organizations & Workgroup" tab.
In addition, many states offer help to consumers with health insurance problems through Consumer Assistance Programs (CAPs) to assist consumers experiencing problems with their health insurance or seeking to learn about health coverage options. State CAPs offer direct assistance by phone, direct mail, email, or walk-in locations to help consumers learn how to obtain or use their insurance effectively. A listing of CAP programs are available here.
posted by katra at 11:34 AM on February 2, 2020
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state medicaid plan for out of network facilities due to just very rare things which included transplant issues. The first place to call is the insurance and second is the nearest transplant facility to explain the situation and guidance to get coverage.
I am not sure of the of the exact termonolgy, but I've seen it done.
posted by AlexiaSky at 6:47 AM on February 2, 2020 [1 favorite]