I wanted to take this time to touch upon one of the biggest issues I’ve faced since embarking on my journey for a transplant: health insurance. I touched upon my initial problems with my health insurance in my last post, and wouldn’t you know, in typical kidneykt style, I already have more insurance issues in 2019!
Some of you may not be aware, but in the United States, we have something called an “open-enrollment period” and during this time you must sign up for healthcare coverage or you will not be covered for the following year. It was November 1st – December 12th nationally, but some states extended the end date until December 31st. This is strictly for buying your own policy through the marketplace if you are not eligible for one through your employer, or other avenues like Medicare or Medicaid. For me, I need a second policy to cover additional medical expenses not covered by Medicare and to be listed for transplant, so I had to purchase it from the marketplace. I already had a plan I was paying for from the previous year, so I renewed it over the phone with an agent to ensure everything would be all set for the following year and set up automatic payment withdrawals for the premiums.
When I was at dialysis on Tuesday, my nephrologist came over to me with a despondent look on his face and said, “So, I’m disappointed to hear we’re having insurance issues again.” Confused, I asked what he meant and he explained he had been contacted by the transplant team (I hadn’t) who stated they were notified I did not have a secondary policy as of January 1st so they took me off of the transplant list. Of course this was news to me, as I had a few weeks prior finalized everything with the agent for my coverage for 2019, so I really had no idea why this would be happening. I was honestly very upset that I was hearing this for the first time from my nephrologist because at this point, it truly felt like the transplant team really didn’t give two shits about me, so much so that they couldn’t even be bothered to notify me of this immediately so we could try to get this issue resolved. I truly have been nothing but an ideal patient since I started dialysis (aside from the fact that I am still refusing the fistula), yet the transplant team truly has done nothing but treat me like a flaky, incompetent person. I feel like I am being retaliated against for confronting them about their massive mistakes last year when scheduling my transplant surgery which directly led to the surgery being postponed. They refuse to accept responsibility for their errors and are trying to place the full responsibility on me by insisting I told them I lost my health insurance (this never happened) which is why they took me off of the list and needed all sorts of documentation to put me back on it. Though them not notifying me of this new issue may seem like a small thing, for me, it compounded on top of every other bad experience I have had with them (IE: Me being told by the financial coordinator that technically she isn’t my financial coordinator until I have transplant surgery, my clueless transplant doctor telling me that having a partial hysterectomy was a blessing in disguise, the living-donor coordinator asking my potential donor if she’d like to altruistically donate to someone else, etc.) and I decided that I want to look for a new transplant team. More on that later.
I contacted the marketplace (called HealthSource RI here) to try to fix my insurance issues. After about an hour and a half of explaining this issue and trying to get it resolved, they explained they weren’t sure why I was removed from my policy, but they couldn’t help me and they wanted me to contact the Department of Human Services (who I already knew couldn’t help me). I contacted my dialysis social worker (who literally keeps me sane) and she said she had other patients who ran into this issue- there seemed to be a glitch in the system for patients that also have Medicare and some of her patients even had prescriptions that weren’t being covered. Before I was able to look into it further, I got a call from HealthSource RI two days after my initial discussions with them. It was from a woman who basically explained she was calling to sign me up for the plan I had initially, again. This call took all of 5 minutes and she backdated the coverage to January 1st. So essentially, I lost my insurance in error and was then taken off of the transplant list in error, while also being told they couldn’t help me in error as well. Again, this may seem like some simple thing that most people wouldn’t get upset over, but the fact that this even happened created a massive amount of unneeded stress and repeated problems like this that are beyond your control take a huge toll on you emotionally. Now that my insurance issues are figured out, I am going to move forward with a new transplant team.
I still have to make the initial appointment, but I have decided to go to UMass in Worcester, Massachusetts which is about a 45-50 minute drive from where I live currently. This is where my brother had his transplant surgery and continues to see his post-transplant doctors. I truly cannot move forward with the transplant team I currently have at Rhode Island Hospital. I have never felt more mistreated by a group of doctors. I would not recommend the transplant team at Rhode Island Hospital for anything at all. Every single person I have worked with- the dietitian, the social worker, the transplant coordinator, the financial coordinator, the transplant doctor and the secretaries- have been extremely impersonal and cold. Whenever I go to my appointments, it feels as though nobody knows me or even cares about me, especially when my transplant doctor reads my file update for the first time when we’re in the room together. I really am looking forward to getting a new team that I can feel good about working with for transplant.
The most frustrating part about all of these experiences is that if I lived in a country that had universal healthcare coverage, I would have had the transplant surgery almost a year ago now. I wouldn’t be required to pay for two insurance policies in order to be listed for transplant. I truly don’t understand how anyone can be against the idea of universal healthcare, and quite frankly, I believe anyone who is really hasn’t done enough research about it. Not only would switching to a universal healthcare model save us trillions of dollars in the long run (there are many economists and lots of data confirming this), but life expectancy would actually RISE again in our country. Health outcomes would be better because people would be able to get the preventative care they need, which can help eliminate people waiting too long to receive the care they need that can exacerbate medical problems. If people are healthier, then they can actually contribute more to society and help the economy thrive. As I stated previously, I could have had a transplant almost a year ago. Imagine if I had, and no longer needed to be on Medicare AND disability, how much money the government would have saved? Our system is deeply broken, and people like me are at the brunt of it.
I contacted my governor immediately after the issues I ran into this week. I told her my story and explained how much we need universal healthcare here. New York City did it- imagine if Rhode Island followed suit (they have 4x the population!)? If we want these systems to change, we must demand they change ourselves. I am extremely passionate about this issue, and would love to help anyone who is too, contact the appropriate people and let them know that things need to change. If you don’t support the idea of universal healthcare in the United States, then you clearly aren’t paying attention!