Follow-up

Well, I have a number to call and check, but DES social rep. (after a few more hours of calls this am) says that after 5am tomorrow I am back on my Health Insurance and will have SNAP re-instated!
So, one more day to "wait and see", but I'm quite hopeful at this stage.



Longer story/saga to come. Might get the press involved again this year. 

Cause, there is something terribly wrong with the system when they lie, just to kick people off and HOPE they are too sick to reapply. 

For Wash, A Rally Cry

Please remember friends, when Kevin "Wash" first became sick in 2009 we tried for months to get him insured and seeing a proper doctor.
We could not afford a trip to the Emergency Room; our local one which would not have even shown his cancer, because they do not have MRI capabilities.
His tumor grew over months. Agonizing months for him, and me.
We were denied AHCCCS insurance first in August 2009. 
Again in September. His Glioblastoma Multiforme tumor growing the whole time.

October came with an appeals date for health insurance; October 28th, 2009.

Kevin was hospitalized from the tumor and brain damage on October 26th, 2009.

Do I think having proper insurance, having a proper doctor earlier would have saved his life? No, he had a GBM. It was a death sentence.
But, I do believe that had we been able to get him a proper MRI that summer when his symptoms were first evident, his tumor would have been smaller, and he might have had a longer time or a better Quality of Life at his very end.

No one should face what we had to at our age. Because of the Affordable Care Act after 2014, hopefully no one will.

But, people DO die in this country every day, who could have been saved with preventive care.
Vote, because your life DOES depend on it.

Ranting

I can think of over 2,000,000 reasons why I dislike/hate (policies) our Insurance Company. The State run, "for the poor people" company.

Cause in our state, even the companies run by the Government are "profit" centered, not focused on giving the BEST healthcare to the Citizens of this state. It has focus on the CHEAPEST care.

AHCCCS does not cover my CAM Boot/cast [DAS BOOT!]. Apparently they only cover casts or walking devices like that if the patient is under 21, or a diabetic. I am neither.

I also now need $209.86 for said Boot. [I spoke with the guy who owns the medical supply place, he's willing to deliver and fit it for free on me in home because of the situation with Wash, but I still have to pay for the boot the insurance won't cover.]

So, I either go without and let my bones get worse and need surgery, or I need an additional $200 from a non-existent income.

THIS IS EVERYTHING THAT IS WRONG WITH PROFIT BASED HEALTHCARE.

Short Commentary

I took 15 mins out of the start of my day to read the news and celebrate the Supreme Court upholding the Affordable Care Act.

Reasons why I personally love the affirmation on the ACA;
1) Because if Kevin "Wash" Pratt-King had been able to get insurance through the State OR an affordable private source when he was unemployed due to his tumor in 2009, his brain cancer might have been caught before it was "terminal" staged.
2) Because Kevin "Wash" was only 25 when this happened, I was 23 and neither of us were able to be covered for insurance under our parents (which again, could have caught the tumor early)
3) Because (hopefully) after 2014 no one will have to have an Insurance Appeals Judge tell them to "move to Canada, we can't pay for your medical needs in this State."
4) Because (hopefully) after 2014 individuals and humans won't have to beg strangers for money to afford medication to live; which caused The Fundly website (for us)to even need to exist; http://fundly.com/thecommunecares

Want to argue with me AGAINST the ACA? Please donate to help our medical bills first; because without the ACA my life and my husband's are literally held by stranger's kindness.

EDIT;

Reasons that Wash and Tashi think The Doctor would also be excited about the ruling today;

1) He's a DOCTOR (of everything!) of course he supports greater access to preventable care

2) Greater chances for medical advancement with more access to patients to study (with informed consent)

3) More preventative care now means less chronic illnesses and death later- MORE COMPANIONS!

4) The Doctor was born with two hearts; he'd be pretty keen on getting rid of "pre-existing conditions" clauses.

5) It saves lives. The Doctor can get behind that.

Stranger than fact

Insurance says- "You haven't been to a hospital for 4 months? RENEW!"

Tashi- "Ok, here's all my paperwork, exactly the same as it's been the last 31 months."

Insurance- "Can you do an in-person interview?"

Tashi- "No."

Insurance- "Can you appoint a proxy?"

Tashi- "YES! Here's the paperwork for it!"

[2 weeks later]

Insurance- "You missed your in-person interview, INSURANCE CANCELLED!"

Tashi- "But, I appointed a proxy, did you not contact them? Can I appeal?"

Insurance- *silence*

Tashi- "Ok, trying another phone number- no, disconnected too. Hmm, this is adding in MORE stress on me this week, I'll just have more asthma meds."

Insurance- *silence*

Tashi- "Ok, now you aren't answering ME or the Ombudsman team. Or Hospice. Not cool, DES."

DES- "Don't blame ALL of us! AHCCCS is a different section of DES, we don't have their direct contact numbers at all! I want to help you, but legally I cannot."

Tashi- *Wheezing*

Insurance- *silence*

Tashi- "If this keeps up, I'm going to end up in the ER because I can't breathe and have a severe asthma flare up/attack."

Insurance- "Well, in THAT case, you'd be approved again."

.............................

Gods, I wish this were fiction.

Stirring the pot

Welp.

The last day (ish) has been quite... interesting.

Wash on Tues had a bad health day, he was having some reactions to his med change. I spent quite a few hours with him trying to distract his pain and discomfort. The upside is these are all very short term side effects so he today feels almost back to his 'normal'.

On Tuesday I was informed that AHCCCS Oversight Dept had been made aware of our issue/situation and would be looking into it. I did not get any real human contact information from the communication. I'm hoping this means someone with power is looking into how William "Bob" Jaegers dropped the ball on our case, and lied. I have no problem using this man's real name. If he wanted to work in a job where he did not actually have to work, there are options. But, not doing his job when people's health and lives are directly impacted is unexcuseable.

In slightly better news, Tues I also heard from someone at the Constituent Services dept of the AZ Legislature. She asked for more information to actually look into our case and I'm having my Social Worker from Hospice help me out there. I think he might also appreciate the chance to ask why (as a Hospice SW) he was blown off by our casemanager Bob Jaegers for two weeks.

ALTCS sent a nurse over to ask Wash and myself some questions and spend about 30 minutes evaluating him. (Which, if you read here at all Wash is very good at covering up his issues for even 2 hours at a time. 30 mins gives no real view as to our lives or issues at all.) She said that he does not outright qualify for ALTCS care but every case that does not immediately qualify gets a medical review. Only one doctor on the review needs to say he does need the care and he's approved. For now, I am hopeful.

It will be a few more days before I know anything about Wash's case. Again though, I'm hopeful.

However, I will not be dropping this issue, or trying to pull it from public eye. No one has yet apologized for the wait, or for lying, or the potential cost in Quality of Life to my husband. I know we are not the only family in Arizona to go through this with ALTCS. I'm beginning to believe as well that if they are careless enough to leave evidence of their lies and harmful policies of us around, there is a lot of evidence that they have harmed others too.

This is a Government run insurance company. They are funded, even partly, from tax dollars. They are require to have Oversight, and they are publicly to be held accountable.

To all who have called, emailed, and faxed on our behalf - I truly thank you. I'm truly saddened that I live in a place where it requires this type of effort and luck to get the care my husband qualifies and is entitled to- not just as a taxpayer and former earner, but as a human being. I believe every human is entitled to healthcare and services as a basic human right. Not even those who would deny that care to others, like my husband or myself, can change my mind. Every human.

Step Up, Arizona, or be Shamed

If you are willing and able, please share this around. Please help me get the message out to those who can help Wash.

6 Feb 2012

To Whom it May Concern,

I am writing to you about two of your constituents in Arizona; S Tashi Pratt-King and Kevin "Wash" Pratt-King. The live in Tempe, Arizona and they need your help- today.

Kevin and Tashi married in the spring of 2009- and within weeks Kevin was sick from an un-diagnosed brain tumor. Tashi had applied for AHCCCS medical coverage throughout the summer and fall of 2009, denied every time. On Tashi's 23rd birthday Kevin had a grand-mal seizure and his tumor was finally discovered at St. Joseph's Hospital in Phoenix, AZ.

His tumor was 9cm- almost as large as a newborn's head. It took two surgeries to remove the tumor and shortly after the couple found out it was malignant and terminal. Kevin was just 25 years old.

After the surgeries they were both approved for AHCCCS coverage, but that would be the start of the insurance issues.

For the past two plus years Tashi has been working full-time as Kevin's non-compensated caregiver. He is not able to be independent anymore and from the start needed full-time care. AHCCCS does not cover the costs of full-time care, so Tashi has been working literally a 24 hour, 7 day a week job caring for him. She does not bring in any income. Kevin receives a small monthly stipend from Disability, it does not begin to cover his real medical costs.

The "Life expectancy" for Kevin's cancer (Glioblastoma Multiforme) is 9-12 months-with treatment. He's at month 27 now.

Brain cancer has several predictable side effects; seizures are common, depression, memory loss, aphasia, blindness, weakness, and severe fatigue. Kevin has all of them. As hard as he has been fighting to live the last two years, he is degrading. The level of care he needs is more than one person can take on around the clock.

In January of 2012 Kevin applied for Hospice Care. This was to go hand-in-hand with his coverage by ALTCS; the Arizona Long Term Care Services, through AHCCCS. Kevin's ALTCS approval letter came in Dec of 2011. This would allow for Respite Care to be provided to Tashi, who has spent the last two years doing nothing but caring for her dying husband. ALTCS covers the long-term-care that his primary insurance, AHCCCS does not.

In January of 2012 Kevin and Tashi were notified through Hospice (never a direct contact from AHCCCS to the couple) that Kevin in fact was NOT covered for ALTCS care, and even with his continued mental and physical degradation, Tashi would still be left to bear all the care.

Kevin's Social Worker (through Hospice) spent more than 2 straight weeks in January trying to get in contact with William "Bob" Jaegers - the caseworker assigned to Kevin's ALTCS case. Bob did not respond until today, Feb 6th.

Two weeks to contact a Social Worker for Hospice (End of Life) is not acceptable for ANY level of healthcare work- unless ALTCS hoped by delaying Kevin's case, he would die before any monies would have to be spent on his care.

Bob confirmed to Tashi that it would be 45 days from "start of application" to have ALTCS approval. When Tashi responded she had proof of Kevin's acceptance as of Dec 2011, Bob flatly denied such 'evidence' could exist and their records showed Kevin applying in Jan 2012.

Please help take immediate action on behalf of Kevin and Tashi. They have evidence (see attached) showing approval of Kevin into the ALTCS program as of Dec 9th, 2011.

Kevin is dying. He is only 27, but with a very virulent brain cancer. Tashi is 25 now. She has not had a "day off" or "weekend" in more than 2 years.

I write to ask you to investigate this matter; or shall we be left with the assumption that in Arizona if you are young, poor, or terminally ill that the State will leave you to die without medical coverage?

Thank you,

S Tashi Pratt-King

(The last paragraph of the letter? "Approved for ALTCS")

http://kyl.senate.gov/contact.cfm

http://mccain.senate.gov/public/index.cfm?FuseAction=Contact.contactform

http://schweikert.house.gov/Contact/

If anyone has media contacts, please share.