Archive for the ‘Kidney Disease’ Category
My massively enlarged polycystic kidneys after my nephrectomy. (I had a transplant a year earlier. Too exhausted now to explain more).November 1, 2013
Washington Hospital Center and Georgetown University Hospital will combine kidney transplant programs in 2011, according to an inside source. This would leave only two transplant centers in the Washington, D.C. region, WHC-Georgetown, and Inova Fairfax Hospital.* The move is expected to result in less choice for kidney transplant recipients, and possibly a reduction in quality.
In the Baltimore area, two hospitals perform kidney transplants, Johns Hopkins Medical Center and the University of Maryland Medical Center. The Washington, D.C. metropolitan area (5.4 million people) has twice as many residents as the Baltimore metropolitan area.
WHC is known for excellent surgeons, but the admistrative structure and customer service have been heavily criticized. WHC has also used inconsistent criteria for keeping patients on the kidney waiting list and is significantly behind other transplant centers in supporting electronic means to search for kidney donors. The staff at WHC has also been accused of being unresponsive.
One patient called WHC’s patient advocate office more than 25 times with no resolution other than being referred back to the transplant office that was originally complained about.
The move is part of a recent trend in hospital consolidations. Johns Hopkins recently merged with Suburban Hospital in Bethesda and Sibley Hospital in Washington.
*The Clinical Center at the National Institutes of Health in Bethesda, Maryland and Walter Reed Army Medical Center in Washington perform a small number of kidney transplants.
About a month ago, I lost my health insurance. Within three weeks, I had gotten it back. Just a few days after I notified Washington Hospital Center that my insurance was gone, they took me off the kidney waiting list.
They claimed I was kicked off the list not just because of a lack of insurance but also because of non-compliance – that I should already be on dialysis. But it seems a little suspicious that I was on the waiting list for two and a half years (see www.mikeneedsakidney.com) and then a few days after I notified them that I’d lost my health insurance, they took me off the list and wouldn’t put me back on even after I told them my insurance was reinstated.
After spending three weeks getting my health insurance back, I’ve now spent another week trying to get back on the WHC waiting list. It seems I’d have a better chance getting one from the Wizard of Oz (on TBS right now). (That reminds me, one of the great signs was put up years ago on a beltway overpass before the Mormon Temple. The sign said, “Surrender Dorothy!” since the temple looks like the Emerald City). At least there’s a better chance of getting a kidney there that than going back to the Wicked Witch of the West (WHC). Though I just saw the scene where they go to the Wizard and his assistant says, “Go away!”
Then there are the lyrics from the song “Tin Man” by America: ”Oz never did give nothing to the Tin Man, That he didn’t, didn’t already have.” Luckily, I’m still on another list, and if I get a donor, the list will be irrelevant, though there is a scenario in which being kicked off the list would cost me my life.
So the health insurance saga continues. It has been almost three weeks since I haven’t had insurance. I’ve contacted the White House, the governor, my congressman, the Maryland Attorney General’s Office, the Maryland Insurance Administration and the Joint Commission on Health Care Organizations, plus many more organizations that I don’t have time to mention.
So the hospital dropped me from the waiting list for a kidney transplant because I don’t have insurance. It’s like an episode of Curb Your Enthusiasm only not that funny. Whatever can go wrong will.
I even faxed a bunch of documents today and the fax said it went through and the recipient says they didn’t get it. Same with scanned and emailed PDF documents.
As for the “Medical non-compliance” part, they claim that I should be on dialysis by now, though I can’t get on it without insurance. It’s just a way to drop me once my insurance terminated.
One thing is clear — the Obama health care plan didn’t go far enough. The law made it illegal for insurance companies to discriminate against people with pre-existing conditions…starting in 2014.
In Maryland, there is a new law that states that you can’t talk on the phone while driving. What if they said, “Here’s the new law…but it doesn’t go into effect until 2014.” At some point a law was also put in place that required people in cars to wear seat belts. What if they said the law doesn’t go into effect for another four years?
I’ve spent the last two weeks working on this and there’s no end in sight.
It’s just typical how people will kick you when you’re down. It’s not, “What can I do to help you get health insurance back?” it’s, “Oh, you lost your insurance? We have to let you go.” It’s amazing how fast they cut me loose. It’s like an athlete having an injury, so he’s temporarily no longer any good to the team, so he gets cut.
CareFirst BlueCross BlueShield Maryland Health Insurance Plan employees are absolutely horrible people. They cancelled me because I forgot one payment and then rejected my appeal, and I have no other prospects for health insurance, and I will need a kidney transplant. These people are unbelievable. I’m pretty sure what they are doing is fraudulent and illegal.
I wrote and called the White House several times with an urgent specific issue about health insurance and got a form letter back. I lost my health insurance with the only company that covers people in Maryland with pre-existing conditions, and I will need dialysis or a kidney transplant soon. The numbers and websites below are no good for me because I’m not eligible for any of those programs. Medicaid has a $12,000 deductible in the first six months which is totally ridiculous.
By the way, a lot of people, including those at Health and Human Services (both national and local) are under the mistaken impression that the new health care law prohibits insurance companies from discriminating against people on the basis of pre-existing conditions, but that’s not true. The provision is only good if you are under 19 or if it is after 2014. In fact, the way the underwriting codes are written, it is literally impossible for someone born with a pre-existing condition to get health insurance except through a federal pool but you have to have not had insurance for six months. Some states like Maryland have their own plans, making people ineligible for the federal plan, and the Maryland Health Insurance Plan was the one that terminated me because I missed a payment. They rejected my appeal. The second appeal is in progress but they say they are too busy to get to it now.
Yesterday I spent the whole day at the local HHS and at the end of the day they finally told me there would be a $12,000 deductible for Medicaid. I wish they had told me that last week when I was there.
Imagine if you forgot to pay your phone bill once, they didn’t give you a warning or even notify you of the termination, and then your phone service was cut off with no chance of getting any other phone service (unless you paid $12,000 first). Well, health insurance is a much more important issue. Without it, my donor can’t get tested, I can’t get my kidney function tested, I can’t get a procedure done to get back on the waiting list, I can’t get surgery to prepare for dialysis, I can’t get medications, not to mention that there’s always the possibility of getting in an accident or getting sick.
Here’s the White House’s form letter back:
Subject: Thank you for your message.
Date: Tue, 16 Nov 2010 18:45:04 -0500
Thank you for writing. I have been moved and inspired by the stories of Americans struggling with health care, and I appreciate your perspective. It is because of the many men and women facing frustration, hardship, and financial burden in addition to significant health problems that we worked so hard to get health reform done.
After a century of striving, after a year of debate, and after a historic vote, health care reform is no longer an unmet promise to the American people. It is the law of the land. While some reforms will be put in place later, a host of desperately needed reforms have already gone into effect. To learn more about what health reform means for you, visit www.HealthCare.gov orwww.WhiteHouse.gov/HealthReform.
As we work together to improve the lives of all our citizens, please know the trials and triumphs of Americans like you motivate my Administration to work even harder to overcome the challenges before us. I am confident we will emerge from these tough times stronger than before with a renewed promise of a better future for all.
For more information on resources that may be available to you, please visit http://go.usa.gov/aIv or http://go.usa.gov/aI7 or call 1-(800)-FED-INFO. Those seeking assistance with health care can also call the Department of Health and Human Services at 1-(877)-696-6775.
Again, thank you for contacting me. I wish you all the best.
I’m getting a little tired of writing about the fact that the only health insurance carrier in Maryland that offers insurance to people with pre-existing conditions dropped me Oct. 31. (You can scroll down to see the other entries). But here goes with some more.
Just to recap, I was born with kidney disease and pretty soon I’ll need dialysis or a transplant. But I can’t do any of the work that needs to be done prior to that without insurance, I can’t continue on the waiting list, and most importantly, any donors that want to get tested can’t. Even if I had someone now and my insurance was active, there might not be enough time to stave off dialysis but without insurance it makes it much less likely that I’ll get the transplant before having to dialyse (see www.mikeneedsakidney.com). Then there’s just the notion that it’s good to have health insurance for non-kidney related reasons.
So yesterday, I found out that my appeal to get the insurance back was rejected. Good news, though – I could send in another appeal. The person from CareFirst (a.k.a. CareLast) said he emailed me the notification that I was rejected. I didn’t get it so I spelled out my email address. I still didn’t get it so I told him to email it to my other address. I still didn’t get it so I emailed him and he said he’d email me the notification.
I asked about the instructions and he told me that he already emailed them to me yesterday.
I finally got them and sent in the second appeal and he said he’d get to it when he got a chance.
I called one of the kidney transplant staff who said that without insurance she expects me to not survive the next year. That’s not exactly correct because as soon as I go on dialysis I’m eligible for Medicare. So one strategy would be to go on dialysis immediately, but the problems with that are: 1) how do I pay for the fistula surgery that is necessary to start dialysis? 2) Do I really want to start dialysis before it’s necessary? and 3) kidney transplants done on people who are already on dialysis are on average less successful than those done on people who haven’t had to go on dialysis.
Anyway, I called a bunch of places, mostly with poor results, and the congressman’s office says to wait a while, but I don’t think that’s right.
After writing all of this I realized it seemed a bit melodramatic. Another person said it sounds like I’m panicking and that I should relax a little. But I think this is important, and there must be a lot of other people in similar situations who aren’t as articulate on paper or in writing, and who are not as persistent. If anyone has a better approach to tackling the problem, I’m listening.
This might be the last blog on this for a while. I went to see Yi vs.Yao last night so I’m going to write about that next.
The good news is the transplant really doesn’t seem like a big deal at all when compared with this insurance problem.
Just to sum up the situation, the Maryland Health Insurance Plan, the only plan in the state of Maryland that covers people who were born with pre-existing conditions, terminated my insurance because I forgot to pay a month. They never gave me a warning, and never even notified me that I was dropped. Now I have literally no health coverage, with my only option being Medicaid, but that can take up to two months to get, and it sounds like you can only make under a certain amount of money to be eligible, and it doesn’t cover as much as MHIP.
In the meantime, I need to get medication, have labwork done, have a procedure before getting reactivated on the kidney transplant waiting list, prepare for dialysis by getting surgery for a fistula if I don’t find a donor soon, and have a potential donor get tested, who can’t get tested without surgery. Plus, it’s good to have insurance just in case something happens.
Why am I writing all of this? 1) To document the process, which might help me get insurance as soon as possible, 2) in the hope that someone might read this and have a suggestion, 3) to show people that it’s a myth that everyone can get health coverage. In fact, it’s impossible for me to get it right now and I’m offering $150 to anyone who can get it for me, 4) It may sound corny, but I really believe in fighting for what is right and just, and 4) There are probably people out there who can’t advocate for themselves and won’t be as persistent as I am, so if I can’t get insurance as I pester congressmen, state delegates, and the White House, how can they?
Most of the responses I’ve gotten over the last couple of days have gone something like this:
- “Oh, you’re in luck. There is one plan that’s like a safety net in Maryland that will cover people with pre-existing conditions. It’s called the Maryland Health Insurance Plan.” Then I say that’s the plan that dropped me. Then they say that’s bordering on criminal for the plan that is supposed to cover people to end the insurance and then refuse to reinstate it.
- “Medicaid is your only option.” But I need something now and I can’t get that now
- “You’re really screwed.”
- “We have rules and regulations. It has to go through a process. It takes 60 days…” These people don’t really care that the situation is urgent. It’s almost as if they take a perverse pleasure in explaining that they have to follow regulations.
So today, here are some of the things I did:
- Called medhealthinsurance.com. They rejected me and said they couldn’t offer me anything “today.” I asked if they could offer anything any other day. They hung up on me.
- Called Health Plan One. It took two hours on hold, but they let me know that they couldn’t cover me.
- Called the Agency for Health Care Research and Quality. They told me that Obamacare, the new law prohibits insurance companies from discriminating on the basis of pre-existing conditions. I informed them they were wrong, that that only goes into effect on January 1, 2014 (it’s in effect now for children).
- Called the National Kidney Foundation who said to call the local HHS office.
- Made a complaint with the Maryland Insurance Administration who informed me that it would take a while.
- Listed a comment on the HHS website requesting information about how to get health insurance.
- Called the HHS “Office of Consumer Information and Insurance/Pre-existing Condition Insurance Plan,” who told me to try MHIP or Medicaid.
- Contacted Congressman Van Hollen’s office, who said they would work really hard on it, but I knew I was at their mercy because there’s no other person who can represent me.
- Heard back from someone who responded to my craiglist ad offering $150 for information that will lead to my getting health insurance ASAP. She hatches a plan that isn’t ideal but just might work. Or not. I agree to pay $50 now and the rest later if it works.
- Emailed Seven on Your Side.
- Contacted the social worker at one of the hospitals I’m working with. She’s on vacation and has no backup.
- Contacted the financial coordinator and left a message.
- Contacted the financial coordinator at another hospital who had “no idea” what I could do.
- Contacted the National Institute of Diabetes and Digestive and Kidney Diseases. Surprisingly, they respond with links to many resources about kidney disease. However, one of the links says, “People who do not have private insurance can work with a social worker, nurse, or doctor to locate and apply for other sources of financial aid,” which is laughable.
- Contacted the Polycystic Kidney Disease (PKD) Foundation who suggested getting Medicaid.
- Contacted the White House who told me to “flag hardship” in my email so it will be noticed.
- Along the way, I also got suggestions to try Medicare, which does cover people who are on dialysis and have had transplant, but doesn’t cover those who are just a few months away from those.
One strategy is just to make sure my kidney function doesn’t go down. One way of doing that?
I will offer a $150 reward to the first person who gives me information that I can use that will lead to immediate health insurance coverage for me. See the blog just below this one for background information. Remember Obamacare, the health care law that was passed this year that prohibited insurance companies from refusing coverage to people with pre-existing conditions? It turns out that that provision is only good for children under age 19. If you’re older than that, you can be discriminated against because of a pre-existing condition up until January 1, 2014.
In Maryland, the Maryland Health Insurance Plan is the one plan that will accept people with pre-existing conditions, but MHIP is the plan that dropped me because I missed a payment. They didn’t even inform me that they dropped me — luckily I found out so I can try to do something about it. I’ve already wasted all of today on it. Of course I called them immediately and asked if I could pay over the phone but that made way too much sense.
Today I applied for CareFirst BlueCross BlueShield “BluePreferred HSA” and got rejected. Then when I called einsurance.com, they said that rejection goes for all the plans they have.
So tomorrow, I plan to apply to several health insurance companies and post the results here. I’ll expose them for the frauds that they are. There’s a misconception that it is now illegal to refuse medical coverage for pre-existing conditions but that’s not true. It’s perfectly legal to reject people if they were born with kidney disease like I was.
So, I can’t rely on doctors, nurses or hospitals to understand what options are out there. I can’t rely on anyone at the National Institutes of Health, where I worked for eight years. I can’t rely on the national or local Department of Health and Human Services. I don’t think I can count on my congressman. So I’m asking the American public to brainstorm and try to figure out a way for me to not only get insurance, but get it right away so I don’t have to wait two months.
Because I’ll need a medical procedure to get activated on the national kidney waiting list, I’ll soon likely need to get surgery to prepare for dialysis, and if I want a donor, he or she cannot get tested unless I have insurance coverage, which will create an even greater need for dialysis and the surgery to prepare for it. This is all not to mention regular medication and labwork that needs to be done in order to measure my kidney function. Since I don’t have many people who read my blog, I’m going to put an ad on craigslist.
If you have any ideas, please contact me at firstname.lastname@example.org.
“Monday’s Funday, Charlie Brown?” ”Nightmare on My Street?” It doesn’t really matter what I call this blog entry.
Last night I went to pick up a prescription for the drug that reduces phosphorous in the blood. I found out that my health insurance had been terminated because of non-payment. I never received any extra notices saying it was late, no warnings, and I wouldn’t have even known that my health insurance was cancelled if I hadn’t gone to the pharmacy.
I can almost hear the critics, the righteous ones, now saying, “You should have paid, and you should have known that might happen. It says it right there in the agreement…” There is no way to automatically pay each month. I happened to forget. If you forget to pay your phone or cable bill, you get a call reminding you. Not so for health insurance.
I very urgently need the insurance for meds, services such as labwork, and for my a potential donor to get tested – I will soon need a transplant or dialysis (www.mikeneedsakidney.com).
CareFirst BCBS/Maryland Health Insurance Plan says I will have to appeal and won’t find out for 60 days. I swear, I could have told them, “I’m going to die at 5 p.m. today, but you can save my life by allowing me to pay the monthly premium and I’ll live,” and they would have probably replied, “I understand, but we can’t do anything. It’s policy.” So I FedExed the letter and it cost $25.
I had to cancel an appointment today at Georgetown Hospital for a kidney transplant evaluation and it takes two and a half months to get an appointment.
I called 311 -that’s when you have something that supposedly isn’t an emergency, and predictably, they treat it like it’s not that important.
I was told to go to the Montgomery County Department of Health and Human Services office and apply for insurance but it takes two months to get it.
So I spent all day at the local HHS and found out that they only offer medical assistance, not health insurance, and that even that takes two months. But not before going to the wrong building. They told me to go to a certain address, and after two hours of waiting I was told it was only for kids and pregnant women. But there were a bunch of men there too and I asked the guy where the sign was indicating that it was for just pregnant women and kids and he said he didn’t know. So he directed me to the right place.
Then I applied for BCBS through einsurance.com and got rejected because of kidney disease. Their earliest start date was 12/1 anyway.
Then I called the US Uninsured Helpline/”Coverage For All” (or at least some) at 800-234-1317 and they directed me to the Maryland Health Insurance Plan (the ones that dropped me and won’t reinstate me for at least two months). They said the only other option is the new federal health care program, but you aren’t eligible for that if you’ve had health insurance the last six months.
One other thing about MHIP is that when you ask to speak to a supervisor, they always say that one will get back to you within 24-48 hours, but it’s a lie — it never happens.
Then I called Medicare. They said I’m only eligible for Medicare if I’m on dialysis or have a transplant. Then I called Social Security. Same thing.
They referred me to healthcare.gov but it turns out that they only mention Medicare, plans like MHIP, and Medicaid, which I found out from Social Security is the same as “medical assistance” and is health insurance, which would work, but I can’t wait that long.
I called and emailed Congressman Van Hollen, who is great at stumping on MSNBC for the Democrats, but so-so at best when responding to important requests from constituents, from what I’ve experienced.
I have a procedure scheduled next week, will need an access for dialysis put in in the next month, and if the hospital finds that my insurance has lapsed, they won’t run the tests on the donor, which would make the need for the dialysis access surgery even greater.
Then I called the “Coverage for All/We’re just kidding about our title” line again and they gave me a bunch of numbers for insurance brokers. The only problem is that they were financial companies.
The bottom line is, how can I get health insurance effective immediately so that 1) any potential donor can get tested, 2) I can get the tests I need to get back on the waiting list, and 3) I can get the surgery for the access for dialysis, plus many other reasons? It seems like there’s literally no way for me to get health insurance now. If anyone knows of a way, if you are the first person to send me information leading to me getting health insurance right away, I will pay you a $100 reward. Seriously. Email me at email@example.com. And also remember that when people scoff at the notion that people can’t get health insurance, and claim that that problem really doesn’t exist, here’s proof.
Reward just went up to $150.
Update: I also called the Maryland Insurance Information to make a complaint and they told me to fax it in and they would investigate it within two months.
I also called MHIP and they said no, you’re not eligible to get reinstated within two months, it will take 12 months.
I also called the White House but got put on hold.
Then I called the National Institute of Diabetes and Digestive and Kidney Diseases and left a message.
I called the Maryland Kidney Disease program but they are only a supplement for people who already have insurance.
Then I called “The Best Affordable Maryland Health Insurance Choices and Ethical Advice from the National Association of Socially Responsible Organizations (NASRO) for Non Profits, Businesses and Individuals/National Association for Socially Responsible Organizations” but the mailbox was full.
I also emailed Francis Collins, the head of the National Institutes of Health, and asked if he would put me in touch with someone at HHS but there was no reply.