More Insurance Woes
We got a call this morning that insurance has declined proton therapy. After an immediate shock response, we got on the phone with the university, ERS, and the insurance company. ERS is the state agency that handles benefits for all state of Texas employees. Apparently insurance is bound by ERS and ERS has said that proton therapy is not covered. So, we have 2 appeals to the insurance that must be declined before ERS will get involved. However, MDA says that there is another patient who has been declined by ERS for proton therapy recently. I'm not optimistic that any of the expense will be covered.
I asked ERS and the insurance company if we would be at a disadvantage for appeal if we moved forward with treatment. They said no, however, the responsibility is ours because there is no guarantee of payment. Therefore, we got the estimate from MDA and are getting the funds together to pay out of pocket up front for treatment. These appeals can take months or a year, so Jason's sister (thanks Cass) found an attorney who can handle the appeals process for us.
So, on the upside, we plan to get up early int he A.M. and get the money to MDA so that we can schedule my first treatment as soon as possible. I'm tired of waiting for this to get going. I just don't know what people without resources do in these situations. I also am puzzled as to why the state of Texas would want to choose a treatment for a tenured faculty member at one of their higher education institutions that will lead to, on average, a loss of 1.1 IQ points per month for up to 3 years after radiation to the brain. Seriously, they can pay for the slightly more expensive treatment that would protect my healthy neurons and have a better, more productive employee for longer. But no, they'd rather have a stupider tenured faculty member. It just makes no sense whatsoever!
Comments (19)
I don't know whether to laugh or cry. As stated above, it seems they are trying to bring down tenured faculty members, IQ & all! I am grateful that you & Jason have resources to move forward with treatment. Even with insurance, patients are not assured of best treatment; only what is approved. Most have to make due with that.
Oh Shannon! I'm sorry for this setback... Don't let it stop your movement forward! You have determined that proton treatment is best for you... And you're right. Keep the faith.... If the insurance companies don't come through, know that there is a universe of support out here for you. It's such a great thing that you and Jason are so strong and off the chart in IQ...... You can navigate this next challenge. Hang in there and know that you stay in our thoughts and prayers!
This is so disheartening. I am very sorry that you're struggling to get the treatment you need. Does anyone know how to go about with a Kickstarter campaign, to help with covering costs? That might be helpful, giving you all some relief with what seems a costly therapy and legal process.
Blast it. Kickstarter is for creative projects, nothing more. Maybe there's another Web funding process that some group has put together.
Giveforward.com?
Gofundme.com?
Giveforward looks great! There is an option for folks who have cancer, in fact. I think it helps not only with raising funds but with managing caregiving and with establishing links with those who have the same ailment. Shannon, would setting up a page like this be helpful to you? Let us know.
It looks as though donations can also be received on this website. I can't research this on my phone...no access to PC right now. We need to check reviews and see which avenue is best if you all agree. Does someone have time to do some research on this?
I'm so sorry to hear this. I hope you do have a Giveforward fund set up so that we can help out. Praying for you.
One thing about any of these online fundraising possibilities is that user fees apply. Also, someone has to be a go-to administrator for posting information, photos, and conducting outreach. Giveforward does provide a team to guide the administrator through the process; that's one reason for the user fees, in fact; and the fees help with tech support, Here is a link to Giveforward reviews: https://www.trustpilot.com/review/www.giveforward.com
We so appreciate that so many people want to help with the finances. We have had several people offer. We have such amazing friends! Right now for this round we had the funds in savings. We are very grateful that we had put that money back. However, we are far more concerned about how we'd pay for this treatment again if/when it is needed (and it probably will be needed again at some point). Our primary focus when this round of treatment is over is building our savings back up so that we can pay for it again if needed at some point. That point in time, when proton is needed again, is when we'd need some kind of gofundme page. So let's hold on to this idea for a year or longer from now (hopefully this treatment will work and it will be a long time before we need it again).
Oh, no! Insurance companies are just wretched. I don't know how you keep from reaching through the phone and strangling whoever on the other end.
I am up for gofundme. It makes me so angry that they are being this shortsighted. You know we'd all chip in because we know this is a long haul battle, and we want all of your resources (You, family, friend, finances) to be strong. Love you so much.
I have a better idea that will help more people than us. Stay tuned for an appeal to put pressure on the state. It's ERS who is dictating this policy. Apparently united healthcare covers this for some people, those whose employers don't restrict this. So we have to change ERS policy!
Agony!!! Frustration!!! Sending lots of positive vibes for strength in dealing with this wretched system!! Think fund raising should start now for future so can build up for when needed. Please continue to keep us posted. Love you.
I don't know the future, but I know the One who holds it! You are all in our prayers. Nurse Debbie / All Saints
Shannon what is ERS? Whoever they are and whoever the insurance company is (?) -- both deserve a special spot you know where. I'm so sorry and disgusted you and Jason have this to deal with. It is cruel and unusual to say the least. I am up for putting pressure like they have never seen on if I can do so from out of state!
OK...this makes me want to say REALLY bad words!!! I'm with everyone else on this...fund raising probably should be started fairly soon.... I can't believe y'all are having to deal with this!?!?!?!? Yes, just tell us where to put the "pressure", and your warriors are on it!