Monday, July 30, 2012

Help Get Alex Back Home

We're supporting a donation drive to help Mike and Kathy not only defray the costs they've incurred during Alex's unexpected stay at the U of M, but help them both get back home.

Click the "GoFundMe" widget on the right and lend them a hand if you can.  Even if you can't, have a good thought or prayer for the family as they battle red tape and illness.

thank you!

Friday, July 27, 2012

TRICARE: Get Different Insurance

This isn't what we were told would happen when the Affordable Care Act (Obamacare) was passed.  We were told that nobody would be denied care, no matter what their circumstances.  We were told that we'd receive the same care that everyone else received, no matter your income.  We were told that you wouldn't be denied insurance because of preexisting conditions, and we were told that no longer would people have to worry about going bankrupt to pay for treatment.

This is all a lie.

This isn't some "greedy" private insurance company, this is from TRICARE, the health care program for Uniformed Service members, retirees and their families worldwide.

If the Wales family wants their terminally ill son treated, they should "get different insurance".

Backed into a corner that bureaucracy created, Kathy accompanied her son to Minnesota for his annual transplant check-up out of their own pocket.  The same check-up they received a waiver for from TRICARE last year, but this year were told was a "luxury".  TRICARE insisted they see a local doctor who knew nothing about Adrenoleukodystrophy (ALD).  The doctor was confident he could treat their son... because he could just Google the disease.

Shortly after arriving in Minnesota, Alex began to suffer seizures.  He was immediately rushed to the hospital and admitted.  Vomiting blood and disoriented, he underwent some diagnostic tests to find out what was happening to him.  Normally Medicare would cover the costs, but because States are ramping up the implementation of Obamacare, each state has their own Medicare program and will not accept Medicare from outside of their state.

Because TRICARE refuses to pay for his stay, Alex is being discharged.  Discharged without finding out what caused and is causing the 12 year old boy's seizures, vomiting blood, lethargy, and disorientation.  Discharged after contracting C. difficile, a potentially fatal bacterial infection commonly found in hospitals.  Discharged but not well enough to fly back to Virginia to see his new "Google" doctor.  Discharged with a contagious bacterial infection.  Discharged and no place to stay except a hotel room his parents can't afford until he can fly again, with no nursing support, no laundry facilities for the horrible complications of C diff, still seizuring.



THIS is the great medical care you will get if you can't afford a private insurer.  This is the death panel you were warned about and scoffed at.  This is the future of health care, coming to a medicaid doctor near you.

Make this blog post viral and send it to your elected representative.  Show your outrage over TRICARE and Medicare's apathy to the plight of this innocent little boy and his family.

Share the following letter from Alex's father to the Air Force Surgeon General that details the hoops, paperwork, and boondoggle they go through every time Alex needs care outside of the limited scope of TRICARE's experience.

If this doesn't make you angry and scared at the same time... I don't know what will.

Sir,

Some details on our issues with Tricare.  I am retired military (USAF MSgt) with Tricare-Prime as our insurance.

As you know, Alex was diagnosed with X-linked Adrenoleukodystrophy in the Spring of 2009.  At the time, the disease was so far progressed that local Children's Medical Center doctors did not give him more than six months to live.  The only option available (and a long shot at that) was an experimental procedure only performed at one hospital in the US at the time, the University of Minnesota Medical Center.  Alex was tested in May and accepted to undergo the treatment, and had a bone-marrow transplant on 23 July 2009 (yes, exactly three years ago today) at the University of Minnesota Medical Center.

For the entire  transplant process and three-month long recovery and follow up process, Tricare was outstanding.  We did not have any issues at all and are very thankful for what has transpired with them.  However, about a year after he returned home, we were informed that we no longer have a case manager and that we are now his case manager in essence.  Additionally, new guidelines limited our ability to retain the care of his normal transplant team physicians as we reside within 50 miles (47.72 via the roads, to be exact).  Of note, even though we live 48 miles away, in the DC area this means an over two-hour transit without anyone in the car to provide assistance to Alex along the way, both ways.  There was, however, the possibility of being "released" from this requirement if we were able to show medical necessity for him to be seen by someone else.

Alex undergoes a week-long battery of specialized ALD testing every year in Minnesota on the anniversary of his transplant in order to determine disease progress, transplant engraftment, and to help his medical team determine the treatment plan for the upcoming year.  Needless to say, this period covers a battery of testing from neuropsych, OT, PT, speech, endocrinology, MRI, and other specifics.  It is only through the entire team of Doctors reviewing all the results of these varied tests that allows them to determine exactly where Alex is and what exact treatment plan adjustments have to be made to meet his needs.

To this point, Alex has proven to be a rare exception among ALD boys in that he still maintains his ability to go to school and learn, as well as retaining memory function.  However, this is at the expense of having lost his vision, mobility (entire left side is unusable, right side is now deteriorating), speech is all but gone, and ability to take and chew food orally is severely reduced (he has a g-tube for meds and nutrition).

It is only through the expert treatment and knowledge of his medical team in Minnesota that he is still with us, that is no exaggeration.

Only a few days ago, we were told by Tricare that in anticipation of the new healthcare act, transplant follow-up was considered a luxury and that a doctor in the local area would be able to review his records and come up with they determined to be an adequate plan of care.  The new guidelines meant that he would not be able to travel to Minnesota and undergo his tests and be covered by Tricare, but rather that he would be seen by "a Doctor" at Walter Reed.  We were able to successfully plead our case of his medical necessity to travel to Minnesota last year in time to secure the proper release and coverage for his trip.

This year, we once again submitted all the required referral paperwork to Tricare six-weeks ahead of his scheduled testing in Minnesota, which is the earliest we are allowed to submit.  We did this in order to preclude any last minute issues and ensure that we could secure transportation, lodging and set  up the test schedule with his team in Minnesota.  Based on our exhaustive efforts last year to prove our case for medical necessity, and not hearing anything back from Tricare as of two weeks prior to his scheduled testing, we were forced to go ahead and make travel and lodging reservations and pay out of pocket to secure these.

Alex and his mother, Kathy, were scheduled to fly out yesterday, 22 Jul, to Minnesota in order to begin his first tests (an MRI) this morning, 23 July, at the UofM Medical Center.  On Thursday, 19 Jul, we were informed by Tricare that we would not be released from local treatment as there was a Doctor at Walter Reed willing to take our case and "examine Alex."  When we pleaded with Tricare as to the necessity of him going to MN, we were told that the Doctor believed he could treat Alex.  When we were able to speak to the Doctor himself (Army Captain Dr Newton, HEM/ONC), he stated that he had not heard of ALD but would "be able to google it" and therefore was confident he could provide adequate treatment.  We spoke to him twice, and both times he did not believe this was a big deal.  As you can imagine, this was very upsetting to us and, in our opinion, medically dangerous for Alex, given the delicate treatment plan and medication regimen that he has been on for three years now.  His medical records alone comprise volumes, as you can imagine, so the offhand trivial comment by this physician was not only hard to accept, but very very distressing to us.

In order that we at least be able to get Alex the bare minimum testing (the full  series would require us to pay $11,000, out of pocket up front, above and beyond the travel, lodging and subsistence costs) we decided to travel to Minnesota anyway and pay for what we could out of pocket, which amounted to his annual MRI there and a visit with his primary ALD Doctors.  At the very least, at least we would be able to consult with them directly and allow them to be able to provide a quick examination for Alex. While certainly not an adequate substitute for the full battery of tests needed, this was, in our view, the best we could hope for and a far cry from a local Doctor who was willing to treat based off of a google search.  After stating that to Dr Newton at Walter Reed, he said he would release us, but when we notified Tricare, they said that even that would not help our immediate case at this point as it would take time to provide release, and even so, there is no guarantee that Tricare would accept charges for the testing.

As there is truly no provision for the complications and requirements of rare diseases in the process and the length of time required to get a myriad of referrals and special medication waivers occupies a great amount of our time (hours and hours per week on the phone tracking down the right person/place to speak to as a start), this has been an ordeal.   In order for us to get a referral, we have to submit to Tricare for specific treatment, wait (at their mercy) for a refusal to exempt from them, then have four days to appeal to the requisite Military Treatment Facility, but this is an ordeal in itself as we are not provided with sufficient information to be able to contact the correct facility and office in order to discuss the case and get them to adjudicate it.  This is not only time consuming but adds significant mental stress and heartache on the families involved, not to mention the very health of the patient.

Additionally, even though we have Medicaid assistance, it only covers Virginia appointments and in the exception granted for out of state, the fact that the new Healthcare Act reduces the medicaid payment to about half of what it used to be has made hospitals (including the University of Minnesota Medical Center as we found out by speaking to them to plead for them to accept medicaid) not accept out of state medicaid any longer.  To add to this mess, the fact that we have not only one (Tricare) but a backup (Medicaid) insurance coverage disqualifies us for special assistance programs that the University of Minnesota was hoping to provide for us.

As you can imagine, our family has suffered significant financial setbacks due to this disease (our older son, Zachary, also has the disease, although not active at this point he still requires specialized treatment at Johns-Hopkins) and we simply cannot afford to pay the full test series at MN.  As it stands, even the minimum testing we are now doing out of pocket has stretched us to the absolute limit.  We implore anyone who can help to please reconsider our case and approve the testing required.  This is not a simple matter of grade of treatment between one doctor and another, or personal preference, but medical necessity that has our child's life in the balance.  We are asking for any compensation that we can get at this point in order to recoup the significant expenditure we have made out of pocket.  We would be more than happy to provide any and all additional information required, please do not hesitate to contact either Kathleen (703-853-3068) or Michael Wales (202-386-3019) at any time day or night.

As an update, last night while waiting to begin testing this morning in MN, Alex suffered a series of seizures that left him unresponsive and required ambulance transport to the ICU.  He is being treated for pneumonia-like symptoms and undergoing an MRI and other tests to determine the cause as I write this.  If there is a saving grace here, we are fortunate that he suffered these seizures in the one place in the country that is best equipped to evaluate and treat the issue as it pertains to ALD.

v/r

Michael and Kathleen Wales

Friday, July 20, 2012

Unintended Consequences of Affordable Care Act

Although some people are applauding the Affordable Care Act (known as Obamacare), there are some that aren't.

With it's promise of "affordable care", not being denied for preexisting conditions, and the same care for everyone, it is proving not to be the case.

"If you like your doctor, you can keep them"  We were told

"You can't be denied coverage for preexisting conditions" We were told

"If you can't afford insurance, you will be eligible for health care exchanges" We were told... except the Supreme Court struck down the mandate that all states be forced to set up health care exchanges, which is a nice way to say "expand your Medicare to include everyone that wants in". 

So, what are the unintended consequences?

Doctors are refusing to accept new Medicare patients.  My own mother is having trouble finding a local doctor that will accept Medicare/Medicaid.  The only one in her town is retiring soon.  The reason?  Medicare/Medicaid pays them so little that they actually lose money they need to keep their offices open.  We're not talking rich, greedy doctors.  We're talking people who took out loans to go through expensive and long medical school, opened a practice, pay their employees to fill out confusion and lengthy reimbursement forms, only to either be paid pennies on the dollar for their services, or have the procedures or care denied by Medicaid/Medicare. 

In Alex's case, the boondoggle of Medicare/Medicaid means that he will no longer be able to see his specialist.  Tricare (the military health insurance plan) has denied to pay for his bone marrow transplant follow-up visits or specialized care in Minnesota.  His Minnesota specialist doesn't accept Virginia Medicaid in Minneapolis and doesn't have a Virginia Medicaid number and doesn't know if his group will let him apply for one.  Tricare's response is that despite the fact that Alex has a rare disease that only affects 1 in 21,000 boys, he can go to any doctor and he can "probably do just fine".

Yes, you read that correctly.  If you are a resident of one state and on Medicaid/Medicare and travel to another state and are injured or get sick... that state and that doctor will treat you, but you may or may not be covered under Medicaid/Medicare under the current Medicaid/Medicare rules. 

This unintended consequence of the Affordable Care Act doesn't affect just Alex.  It will affect you eventually.  The amount of money that Medicaid/Medicare will reimburse doctors is so small, that some polls that targeted doctors suggest that they would quit the profession rather than deal with the new requirements, forms, small reimbursements, and government intrusion on what they can and can't treat.

Yes, under the Affordable Care Act, you will be able to be covered under an insurance plan, most likely a state Medicaid/Medicare program.  That doesn't mean you will be able to see a doctor, or get treated for whatever ailment or injury for which you are seeing a doctor.

In Alex's case, seeing a specialist for a rare disease is tantamount to his survival, and yet he has been denied this care.

Please reach out to your representatives:

To find your Senator click here

To find your House Representative click here

Contact Tricare click here

Contact any media resources you have and let them know about Alex and that he is being denied the care he needs to survive, despite the well intentioned 2,700 page Affordable Care Act.

Saturday, November 5, 2011

We Need Your Voice!

For those who have been following the blog, you know that ALD will take Alex's life eventually.

Although his transplant did engraft 100%, it did nothing to slow or stop the neurons that are slowing dying in his brain, and his most recent MRI results showed disease progression.

His deterioation includes violent physical and verbal outbursts that they are trying to control with his medications, and chronic painful muscle spasms and involuntary contractions of the muscles.  They have run out of medications and treatments to help control these spasms and contractions and have been advised by their doctor that botox injections may help control them and stop the pain.... except that Tricare won't approve or pay for these injections.

Botox has not been approved by the bureacracy of Federal regulators for the treatment of muscle spasms and pain, but increasingly specialists have found that they do help, as countless articles on the subject prove.  Regardless of whether they work or not, there have been no known side effects from trying, and in the case of Alex... Tricare won't pay to give a dying little boy the chance of less pain during his too short life.

Kathy has been on the phone with Tricare and its bureaucracy for days trying to get them to allow and pay for these injections, but she is read from the Tricare book of rules and regulations on why they are disallowed.  Amazingly enough, when Alex turns 18, Tricare will pay for Botox for cosmetic reasons to remove wrinkles!!!


Alex will most likely never live to see 18, and isn't asking for something as vain as looking more acceptable, he needs botox so that his muscles will stop contracting painfully.  Alex needs botox so that his last days on this world are not miserable and painful.

We need you to contact your elected representatives and demand that Tricare allow and pay for Alex's botox shots!  If there's even the remote chance that they provide him with relief from this horrible disease it needs to be allowed and paid for.  Don't allow stupid bureaucrats to decide what treatment Alex or the rest of us "need" or will be paid for.

To find your elected Congressman click here

To find your elected Senator click here

To call Tricare click here

Please write, call, e-mail, fax, or visit your elected representative and tell them that Tricare MUST allow and pay for botox shots for Alex Wales of Virginia.  Have them contact one of the three contacts below and we will get them in touch with the family:

Penny Blankenship - 410-921-0144 or penny.blankenship@gmail.com
Kristin Fox: ineversettle@gmail.com
Jena Fuller: fuller.js@gmail.com

Share this post on Facebook, twitter, e-mail it, tell the media, spread the word!  We will not stand idly by while this little boy suffers because Tricare doesn't care!


Update on Alex's Service Dog

Thanks to your generous donations, the family was able to bring Sam the service dog to their home.  Unfortunately, Alex's condition made it very hard for him to help Sam learn the skills needed to help him. 


Service dogs are typically meant to bond with the person that they are helping by having their person care for them, teach them new skills and give them very detailed direction.  Alex is unable to clearly communicate with Sam and the challenges were just too much for Sam to do his job.

The good news is that Sam will go back to his training and will be paired with another person to learn how to help them.  The Wales family thanks Sam for trying so hard to be Alex's best friend and helper and wishes him the best on his next assignment.

Your donations will still go to a good cause, as the family is now looking in to finding the perfect therapy dog for Alex.  Its quite clear that what Alex really needs is a friend to snuggle with him, calm him down when things get too much for him, and to have someone there for him when the times get tough and he doesn't feel good.  The really good news is that the money collected will just about pay for a trained therapy dog.  The family is receiving guidance from people familiar with the therapy dog programs, and will go about finding the perfect friend for Alex. 

If you have experience with therapy dog training, know of a good organization that trains therapy dogs, or are a therapy dog team member, either leave a comment or send any of the family's support team (located in the upper right) an e-mail and we can get you in touch with the family so you can provide them with some help in deciding the best friend type for Alex and his condition.

We will continue to update you on the family and the new addition to their home, and how a pup can make a sick little boy feel like a part of the world again.

Friday, September 23, 2011

Help Alex Get a Service Dog!

Alex Wales, 11 years old, was diagnosed with Adrenoleukodystrophy early in 2009 and underwent a bone marrow transplant later that year. ALD is a progressive, degenerative disorder... you may have seen the movie "Lorenzo's Oil," which was based on the true story of a young boy who suffered from the disease and his parents' efforts to help him.

Recent tests have concluded that Alex's bone marrow transplant wasn't successful and his ability function in several areas continues to decline.

Alex needs a service dog to assist him with daily living tasks. In fact, he's picked out a beautiful dog named Sam. Friends are trying to raise funds to cover this expense, which is not reimbursed by insurance. Our goal is $6500 in the next month.

Donations may be made by check payable to: 

Mike Wales, 
c/o Friends of Alex, 
6424 Birchleigh Circle
Alexandria, VA 22315

To learn more about Alex's journey, or to buy ALD awareness t-shirts and support the cause, visit his CaringBridge site: http://www.caringbridge.org/visit/awales/

There is also a Zazzle store to help bring awareness to this horrible disease

Thanks in advance for your support. Please share and invite your friends to help Alex too.

Sunday, July 24, 2011

Happy 2nd Birthday Alex!

Even though he's 10, Alex celebrated his 2nd birthday on Saturday, July 23rd.  Two years ago that day he received, what everyone hoped to be, a bone marrow transplant that would put a stop to the deadly disease that is raging through his body.

The week of 14 July 2011, Kathy packed Zach and Alex up for their annual trek to Minnesota for testing to see how the medications and procedures were doing to keep ALD at bay. 

The family is pleased to report that Zach's MRI showed no progression of the disease, and are heartened by his doctor's diagnosis that Zach should live a long and healthy life.  This is wonderful news to all of us, and a sigh of relief.

Unfortunately for Alex, his MRI shows disease progression, and its clear that the transplant (although having a 100% engraft) is doing nothing to slow or stop the neurons that are slowly dying in his brain.

I can't imagine the disappointment and heartache my friends are feeling about this development.  They tell me that although there are other studies and concepts being worked toward finding a treatment for this horrible disease, there is nothing close to being ready for release...

Despite the news, the part went ahead as scheduled, because even though the transplant wasn't successful, Alex is very special and marking the anniversary of his transplant is very important, because not all kids in his situation make it as far as he has, and every day should be a celebration.

It was an honor to drive down to Virginia and actually meet Alex and Zach for the first time.  The party was in the community center and was full of friends, balloons, food, gifts, and a very happy, charming, quick-witted star of the day: Alex.
Alex, a regular chick magnet
The only person I knew in this filled room was Mike, who I hadn't seen in 30 years since we were stationed in Berlin with the US Air Force, but I was struck by the community gathering and celebrating a bittersweet milestone.  You couldn't tell from the discussions that it was anything other than a victory to be there.

We got to meet Alex's teachers and classmates, all who fought the school system to keep Alex in their class instead of sending him to a special needs school.  They all had stories of his antics and what he brought to their lives, even the smallest children there.

We got to meet neighbors and close friends who all had stories of coming together as family to help The Wales family through the hardships of caring for Alex, and doing even the smallest of things to help them get through the many hospital trips, the procedures, the ups and downs.

We finally got to meet Kathy, who I still don't know how she handles all of the responsibilities of raising a teenager and such a special boy as Alex and still manages to laugh and smile and be supportive of others who don't have nearly as much on their plate as she does.


I have no idea how this family can go day to day without knowing what each hour will bring them.  The disease is such that one minute everything is fine, and the next is a trip to the emergency room or another hospital stay.  There's no planning in the future, not even for the next day for them because of how this disease progresses and takes over their lives.  It feels selfish that I'm planning for a week off in September, and yet they can't even plan for tomorrow.  Every day for them is a roller coaster of uncertainty, but eventually there is one known thing, and that is that the disease will eventually win.  Probably in the cruelest form, there is no way to know if it will win tomorrow, or years from now.
Alex laughing at something his father told him

Selfishly, I don't know what is better; being this remote person who knows a person who is going through this and trying to help from that distance, or the one I am now, having met Alex, hearing his hysterically funny laugh, seeing his amazing smile, and knowing how many lives he's touched with his sense of humor and intelligence trapped in a body that is failing him.  I can say with certainty that I am a much better person for meeting him and having time to sit and talk with him.


Alex's Beads of Courage

The biggest lesson learned is that despite all of what he is going through, what he has gone through, and what he will go through, Alex teaches us that adversity brings us all together, that there's always something to laugh about, and when you put everything he's been through in a chain of beads that he receives from the wonderful organization called Beads of Courage, looking back at being stuck in traffic, or not getting a raise, or any of the petty little things that we think ruins our lives or frustrates us... its no big thing compared to what others endure.

We need to cherish each and every day we draw breath on this world, and we also need to reach out and help those who need it more than we do.