My Letter to the New York Times
Since November 16th, when the New York Health Exchange opened its cyber doors for open enrollment, I have been on a seemingly futile quest to update the family’s health insurance. This is a critical issue for us for obvious reasons, but even more so this year because, as those of you who read the blog know, Empire BC/BS dropped out of Child Health Plus starting in January 2015. I have until December 15th to switch the girls to a new provider under Child Health Plus or they aren’t insured.
Now, I could scramble to get them insured under a family plan while the Exchange gets its shit together, but the out of pocket maximum for most of these plans is in the thousands. Also, I can’t switch plans at the moment (through the exchange), so I’d need to go through a broker which I’m trying to avoid because I think that means I don’t get any kind of subsidy with the plan I choose (though not clear on this).
I’ve been logging into NYstateofhealth.ny.gov every day since 11/16, and I’ve been calling almost daily since 11/21, trying to get an update on this issue. When do they expect to resolve it? Will it get done prior to 12/15? I’m concerned because, you know, MY CHILD HAS CANCER. When I get to that part -the part about Ana having cancer, being maintained on a critical drug that is likely keeping her stable, needing her anti-rejection medication every day to prevent her from DYING, I actually get less of a reaction than when I first call. Maybe the reps on the other end think I’m exaggerating, or lying outright, or they don’t give a shit because they have to wait for the mysterious tech support team who apparently is housed in a tower of glass without any phone or email contact. I have a message for this team:
Dear Mr. Reporter,
I’m experiencing what seems to be a technical glitch at the NY Health Exchange’s web site (nystateofhealth.ny.gov). I’m writing to you because I’m at the end of my rope – I’ve been trying to renew my health insurance for myself and my family since the Exchange opened on 11/16. This wouldn’t be such a big deal if my daughter, Ana, didn’t have cancer.
She had a liver transplant in February 2013 and is on medication to prevent rejection – she can’t even take this medication a couple of hours late, much less miss a day or a week because we don’t have coverage. Ana is thirteen years old and her cancer returned at the end of last year. She’s had two surgeries to remove tumors in her abdomen and pelvis since then (the most recent one was this past September). She has over twelve tumors in her lungs (likely many more) which are currently stable due to a very expensive drug she takes daily.
Ana is insured with Child Health Plus and the carrier is Empire BC/BS. We received a letter in November stating that BC/BS was dropping out of Child Health Plus and we needed to switch our children to a different carrier by 12/15. So, I’ve been logging into the Exchange daily and trying to renew my application since 11/16. I’ve called over eight times and I keep getting the same story from whoever I speak with – it’s a technical glitch, the problem is with tech support, they can’t estimate when it will be resolved.
When I (hysterically) explain that my child has cancer and this needs to be resolved now, I am told that they are very sorry for the inconvenience, they can back date the insurance policy and I should let my daughter’s doctors know, and then (universally) the rep I speak with gets annoyed with me and basically shuts the call down, “Is there anything else I can help you with?” While I may be able to convince Ana’s doctors at Columbia Presbyterian to wait until the Exchange figures it out, I know there’s no way I can get her medication without insurance.
With those parting words, I hang up, and call again the next day, only to get the same story. Meanwhile, the deadline is running out. Ana’s anti-rejection medication can cost as much as $1000/month. Her targeted chemotherapy drug retails for about $10,000/month (possibly twice that). I’m self-employed and every day is a struggle, particularly since Ana got sick.
I just want to be able to enroll my kids in Fidelis with Child Health Plus. I feel completely helpless right now, like a number, like I’m over-reacting when I call the exchange and tell them, “This is life or death!” I can practically feel them rolling their eyes on the other end of the line. “There’s nothing we can do. We have to wait for tech support to fix this.” How is this acceptable? How come they’re not making this a priority? Maybe because Ana is my daughter, and not theirs, it doesn’t seem real to them, or maybe they think I’m making it up. I don’t know, but I’m at a complete loss.
Can you help? Can you write a story? Can you point me in the direction of some kind of media magician that will light a fire under these people so that I can get my kids enrolled?
And there it is. If the Exchange doesn’t get this thing sorted out by the 10th, I’m going to try to enroll the entire family in a Health Republic Plan which will likely be upwards of $1000/month and have lots of coinsurance, copayments and other fees – not to mention their pediatrician isn’t in the plan. I don’t want to do this because I’m not sure if I can switch the plan once I enroll, and my goal is to try to get them into Child Health Plus, which has been a blessing to work with throughout 2014.
And…to add stress on top of stress…Ana has a CT scan this Friday. Fingers crossed that the scan brings good news.