On a brain tumor website?
I am a Canadian who resides in the USA. Having the election around me with not the right to vote- made me feel like a suffragette… as I tried to influence my American husband. Perhaps now it is time for me to finally fill out the naturalization forms.
Yes this discussion does fit here. Can we have this discussion here?
“Yes we can� 
LOL
This whole AN experience is what enlightened me of how many people here do
not have access to quality healthcare based on their socio economic situations. I am one who
does have good insurance to pick and choose a doctor and find people of greater knowledge & experience- out of the state I reside in. One too may AN patients had to leave work because of symptoms related to their AN tumor. Once they left their work they lost their medical insurance coverage as an employee benefit.
I go to ANA meetings and my heart pours out to those who can only choose the AN treatment options that only their insurance will afford them and not always is it the best option (and plan) for their AN tumor treatment
… but only what they can afford. I know a person who sold their house and moved in with their aging parent as to afford the treatment she needed. Many are having the surgery when really they are still an excellent “watch & wait� candidate as they want to have their treatment
before they retire and loose their employee benefits. Why?
They are worried they might not have health insurance coverage when the time proves that the tumor actually has to be removed (or not). It was not until I went through this AN journey and went to ANA meetings that I developed some
true empathy and understanding for what these people go through. Some people are
not getting facial help as their insurance feel this is “cosmetic�. Facial nerve trauma is so obviously related to the AN tumor yet some insurance companies do not get this. SO many patients are already fatigued from their AN tumor and yet they have to use their energy reserves to deal with self righteous insurance companies- only to get turned down. (Read our ANA insurance threads to see documented proof of this.) I am getting help from my excellent corporate insurance company however one too many are not this fortunate. I guess this is why I am trying to work with the medical practioners, here where I live, to make better care available to AN patients “in state�… Bringing in a neuro muscular training retraining speaker from another state… is just a start… but the truth is we DO need to change “the system� that is failing
one too many of these AN patients (especially those with limited coverage or no insurance).
Some AN patient may not be as lucky as Michael Gates Gill who was actually “able bodied� enough to go find another job with a good benefit package. (Referring to The
How Starbucks saved my Life book – soon to be a Tom Hanks starring movie -here.) For some … the sound of the espresso machine can be too much for AN patients with
hyperacusis. Yet if these people could get proper treatment and occupational therapy this is what can get them back to health and it the workforce again… BUT if you have no insurance how do you afford help? Also people need to remember that this author is still on the W & W mode. Perhaps there will be a sequel story published.
The outcome of the election will hopefully, in the long run, allow people who are currently at an insurance disadvantage to seek “the best� caregivers and practioners to assist them through their AN journey.
We definitely need change here. There is not one policy or politician that is going to change this overnight. It is going to take a cooperative democratic process where people listen to each other. Most importantly having understanding and empathy for those who are disadvantaged who find themselves between a rock and a hard spot. We do not want to be in a position as my Canadian relatives are- in that you have to wait months to just get an MRI done. Nevertheless we also don’t want to be at the extreme that I am seeing with some patients here in the USA- no coverage. There needs to be balance.
I see the ANA as an advocacy group for patients. It is also an organization whose role is to educate. We all know that not only do patients need more education on AN treatment but so do some medical practioners as one too many of us waited years to get an accurate diagnoses. We can all do better at educating if we have adequate funding to provide instructional materials and forums … and it certainly helps if we have a “system� that works better… at a “federal leadership level� included.
One of the freedoms I SO respect here in the USA is the “freedom of speech�. I truly feel that this is probably why this is the most active AN tumor on-line discussion group in “the world�. This forum has provided me a wealth of information that my 30 minute visits to the doctor did not… because people
here were able to express their ideas. I was able to follow leads and seek information.
Believe me the USA is
not a place of
apathy.
“Freedom of speech� is a wonderful right! The key is to use it wisely and
never take this for granted.
Can we discuss these issues here?
Yes we can! This is one of the most helpful and civil forums I know of- many very respectful people here... to whom I am most grateful of.
God bless the USA…
DHM
