To the elders at Harambee:
When you have lived on TPN for 11 years as Jenn has, every year brings new insurance coverage and home-health supplier issues. This year’s transition has been absolutely brutal.
Because of the financial pressure that insurers are under, Regence modified Jenn’s Medicare Advantage plan in ways that would have changed the coverage of Jenn’s home infusion equipment, medication, and supplies from 100% to weekly expenses of over $500. There would have been caps on out-of-pocket expenses, of course, but we still would have been on the hook for combined completely new out-of-pocket expenses of more than $14,000. And that on top of the usual thousands of dollars we spend on Jenn’s premiums, procedures, hospital stays, E.R. episodes, and doctor/specialist visits. In 2014, our taxable income was only $600.00, so it doesn’t take much math to figure out that the scenario was unsupportable. And the state Insurance Commissioner told us that Regence is completely within their rights to make such changes. No recourse for appeal short of an Act of Congress.
So at the advice of several knowledgeable parties, we embarked on an extended and excruciating process of changing insurers (throwing over the Regence Advantage plan for a Premera Medigap plan, a Humana prescription drug plan, and a Nationwide dental plan at a combined premium increase of $250 / mo.) and home-health suppliers. We understood that the crucial issue would be Jenn’s I.V. nutrition (TPN–the lion’s share of the new Regence plan costs), and knew that there were no guarantees that Jenn would either a.) get approved for the Premera plan or b.) get approved by Medicare rules under that plan. Both approvals miraculously came through just in time for Jenn to get her nutrition flowing literally the day after she was scheduled to run out of her previous prescription. And the TPN is, in fact, 100% covered.
We openly recognized those defying-the-odds blessings as miracles, and praised God for them. In John Prince’s words, as he prayed for us: “We praise You for the miracles you have already performed, and for those yet to come.”
Fast forward just 48 more hours… when we found out that the uncovered portions of Jenn’s prescription I.V. meds still come to over $3000 per week. On top of that, the supplies necessary for administration of the I.V. meds come at a cost of $30 per day… with no caps. So we are on the hook for $10,000 in supplies for the year, plus $4850 in initial drug plan expenses, plus another 5% of what we incur beyond that level. All told, our situation is somewhat worse than if we had stayed with the original plan and supplier. We’re likely to owe in excess of $17,000 in expenses that we simply have no way of paying for.
Our one hope at this point — with absolutely no recourse for appeal of any of the above — is acceptance into our supplier’s Financial Hardship program, which would write off 100% of our uncovered prescription and supplies expenses. That’s our major need and prayer right now. We had expected an answer on that by Tuesday or Wednesday, by which time we’d already be on the hook for $6000 or so.
We still don’t know what the outcome will be.
After 12 years of continuous and incredibly expensive health care, it is a miracle that we have not yet gone into debt. The insurance system has worked in our favor. Those seemingly useless insurance premiums everyone complains about? They go to keep people like Jenn alive.
Well, the wheels are falling off that system as the political/financial pressure is to provide basic services for more people while pushing the cost of “non-basic” services back onto those receiving them.
The net effect for Jenn is emotionally devastating. She is feeling more and more like a drain on material, financial, emotional, and spiritual resources and questions whether it’s worth continuing to live. She is, in effect, on walk-around life support and has been for years. Any time she wants to she can effectively “pull the plug” and just let things take their course.
So our secondary need and prayer is for some relief from the stress and toll this is taking on Jenn, on me, and on our marriage. It’s difficult just finding any shred of joy, much less happiness, in any given day. Things have gotten very grim.
The obvious alternatives are really horrendous things like getting divorced (or me going on unemployment and selling our home) so that Jenn (or we) could qualify for Medicaid… but I seriously doubt that would solve the scenario, either.
Less obvious but almost as distasteful alternatives include refinancing our home (effectively removing the only financial safety net we have) or scrambling to find some manufacturer who’d be willing to put us on their charity rolls for supplies.
So please, please, keep praying for a positive outcome for the Financial Hardship application. And please, please, just affirm with us how much this whole thing stinks, and how much we need to do what we can while trusting in God to sort things out.
What we really do not need is more advice or uninformed ideas about what we might try. Our situation is even beyond professionals who work in this business day in and day out. We’ve truly reached the end of our options, and just need God to come through on this Financial Hardship plan… and then grit our teeth for the next round in 10 months or so when all the rules change again.
And please do not tell us how much you admire our strength, our courage, or our grace under pressure. When you see us at church, it’s because we have enough strength to be there. An awful lot of the time, we have little or no strength at all, and our behavior at home is often nothing to be admired. It’s really feeling like we are entering the End Game stage of this saga, and it’s not very pleasant.
The following is a text poem that Jenn wrote in reply to prayers during Harambee’s worship on January 10.
Thank you for your
ONEness. Never been
empty.of hope.light.
joy.still
plunging.farther.into
darknesstotaldarknes
sblinded in black
unknown bottomless.
You Show Love. You.
Our Harambee Give to
My endless Needy
Needy Vacuum Energy
And Complaint.
Always Ever Only
Forever Endless
TAKE.Why
Give.Why.Why feed
the TAKE.WHY.Always
Give To what nogives.
A NOGIVE. WHY. Greg
gives.I take but you
text the TAKE.
YOU Are
Only.Light.Love.Hope.
JESUS we can see.
Feel. Remember.
hearing loud lies.too
exhausted to even
want to fight.
DONE.please.pray.ple
ase see light be light
have light for
us.maybe God Hears
You.