rowyn

At the end of June, I had to switch health insurance providers because COBRA ran out on my existing insurance. I purchased new insurance for Lut, because ever since he got on Medicaid four years ago, I have feared he will require a treatment or a provider that won’t take Medicaid. (I am seriously questioning the wisdom of this choice.)

He started a course of Revlimid and Ninlaro on July 5, and I made sure to order the medication before the end of June because I didn’t want the first thing I did with a new insurer be “order $25,000 of specialty cancer meds.” I didn’t know if Medicaid would pay for the drugs or not (basically, no one knows the answer to these things until they actually try). And unlike clinical or hospital treatment, which you receive first and deal with paying for later, you can’t get medicines without paying up front.

But you can only order a month of these incredibly expensive drugs at a time. This is for good reason: Lut’s dosage was reduced this month, for example, so he can’t continue to take the old capsules (the capsules are not divisible, and they are sufficiently hazardous that, for example, pregnant medical professionals are not allowed to handle them.)

This meant that we had to get a new round of medications to start Lut on as of August 2.

A timeline of the saga!

July 13: Cigna sends us a pre-authorization letter for the Revlimid and Ninlaro prescriptions, to let us know they will be covered.
Friday, July 23-ish: Sarah Cannon Cancer Center sends the prescription to to CVS Specialty Pharmacy.
Wednesday, July 28: I call CVS Specialty Pharmacy and spend ~25 minutes scheduling delivery for Friday, 7/30. In the evening, I fly out to visit Terry. I give Lut his insurance cards in case he has an emergency (I usually carry them because I’m always with him when he sees a medical professional.)
Friday, July 30, 6PM Central: CVS Specialty Pharmacy calls to say that they do not take our new insurer, Cigna. Cigna has their own specialty pharmacy, Accredo. CVS Specialty Pharmacy does the best they can to transfer our info to Accredo.
I call Accredo. The first person at Accredo transfers me to a new person who works with specialty meds. (From here on, assume that any call to Accredo required talking to a minimum of two people unless otherwise specified). They eventually conclude that they know about Lut and have his Cigna information, but don’t have his Medicaid number. They know about the prescription from CVS, but they can’t fill it without the clinic sending it to them directly. (I suspect, but do not know, that this is a regulatory requirement.) The clinic is closed, and will not re-open until Monday. They ask when Lut is supposed to start taking it. “On Monday,” I tell them.
I don’t have Lut’s Medicaid info. I email him to ask him to call Accredo and give it to them.
Saturday, July 31, night: I check my email and discover Lut sent me the Medicaid number and asked me to call Accredo. Accredo is already closed.
Sunday, August 1: I call Accredo. They are not open on Sunday.
Monday, August 2: I call Accredo, and give his Medicaid number to them. The person taking the information is confused and upset that Medicaid only has a member ID, and not a slew of other numbers like private insurers.
I call the clinic and leave a message that they need to send the prescriptions to Accredo.
Tuesday, August 3: The clinic returns my call. They will send the prescription to Accredo tomorrow.
Wednesday, August 4: I get an email from Cigna that they have “new documents” for Lut. I check Lut’s account, and it shows the Ninlaro with a $7900 co-pay. The co-pay is exactly what I expected: the remaining out-of-pocket for the new insurance policy. I anticipate that either Medicaid or Celgene’s grant program will cover the co-pay.
I call Accredo. They have the prescription but Missouri state law requires that it be authorized by a physician, and the clinic put the nurse practitioner down as the prescriber instead. They ask when Lut is supposed to start taking it. “Two days ago,” I tell them.
I call the clinic and leave a message asking them to get Accredo additional information.
Thursday, August 5: The clinic calls me back to say they got Accredo the information they needed.
I call Accredo. Accredo says they have the information they need but they’re waiting on authorization from the insurer. I remind them that Lut also has Medicaid. Accredo: “He does? We don’t show that.” I give them the Medicaid number again. Accredo says it takes “a day or two” to get the prescription approved and filled, and they will call me when it’s ready for scheduling. They ask when Lut is supposed to start taking it. “4 days ago,” I tell them.
I take pictures of Lut’s insurance cards and store them in EverNote, so that I’ll have them on my phone for future reference.
Monday, August 9: I call Accredo and ask their automated system for a status update on the order. It is “processing.”
Wednesday, August 11, 10AM: I call Accredo and wait on hold to talk to a person about why this is still “processing”. After being shuttled through a few people, I reach a rep who tells me: “It takes 5-7 business days for a new prescription to go through. But I’ll mark it as ‘Urgent’ for you. When is he supposed to start taking it?” “9 days ago.”
I call the clinic to ask if they want to reschedule the 8/20 appointment that was supposed to be ‘after you finish the next course of Revlimid’ and will now be -- at best -- after a week of it. I leave a slightly hysterical message to this effect.
The clinic calls back to say that they’ve been monitoring the prescription and they had last called Accredo on Tuesday about it. Accredo had told them ‘we’ll mark it as urgent.’
Thursday, August 12, morning: A bot from Accredo calls me. “We’re calling to schedule your order. Wait, we can’t schedule your order. You need to talk to a person.” It puts me on hold for several minutes, then gives me a number and asks me if I want to call back or stay on hold. Me: “sure let's hold some more because lord knows if you'll have any clue why I'm calling or what I need if I call back. Since you haven’t told me why you called.”
I hold for several more minutes, and am put through to payment options.
Payment Options: “I have no idea who you are or why you are calling us.”
Me: gives them all the information about Lut and herself
Payment Options: “The system says we’re waiting for prior authorization.”
Me: “you know, the insurance co sent us prior authorization on July 13”
Payment: “Oh yeah, we show that for July 20. Let me put you through to an expert on Revlimid & Ninlaro.”
I hold.
Expert: “We're waiting on prior auth”
Me: “I really don’t think you are.”
Expert: pokes more
Expert: “Wait we have authorization. We can send you the drugs! But oh ... there's a $7900 copay”
Me: "So he has Medicaid”
Expert: “He does? We don't show that.”
Me: gives Medicaid info to Accredo for the third time
Expert: pokes system some more
Expert: “So Ninlaro shows no copay now, let me re-submit the claim on Revlimid ...”
Expert: “There's no copay on Revlimid either now?”
Me: “Yay? I wish I knew why.”
Expert: “yeah me too. I will put a note for Scheduling to call you to schedule delivery.”
Thursday Afternoon: The clinic calls me. “So I just got off the phone with Accredo and there’s a $7900 co-pay on the Revlimid.”
Me: “I wish this surprised me in any way.”
Me: “So he’s got Medicaid and also there’s a grant program for Revlimid so I’m not sure why they can’t charge the co-pay to one or the other of those.”
Clinic: “I’m gonna call our sales rep contact with Accredo, but he might be gone for the day. I’ll call you back tomorrow with whatever I find out.”
August 13, Friday, morning: Accredo bot calls: “We need to schedule a delivery. Oh wait, we can’t. Let me put you through a person.”
Me: “Is this just going to be yesterday morning all over again?”
Accredo bot: ¯_(ツ)_/¯
Me: holds for a few minutes
Accredo rep: “I know who you were called regarding”
Me: “Woohoo!”
Accredo rep: gets standard confirming info from me “Okay, so we got your Medicaid verified. You don’t owe anything for the meds.”
Me: “Yay! Does that mean we can schedule delivery now?”
Accredo rep: “Yes! Let me put you through to scheduling.”
Me: holds for several minutes
Same Accredo rep: “... so it turns out no. They need to do a few more things before it’s ready for scheduling. This call was just to let you know the Medicaid was verified. Another bot will call you when it’s ready for scheduling.”

And that brings us to the present: still waiting. At least we’re back to “no money owed”, but at this point I will not believe that the process is over until I actually have a Revlimid bottle for the correct dosage in my hands.

Getting treatment for cancer is not as bad as having cancer, but it is A LOT. x_x

I went through Lut's email and found some email addresses from 2009 for family members. I tried emailing, and reached one of his brothers and one of his sisters. They contacted the rest of his family for me, so his family knows now. Three of his siblings are going to come on Friday to see him.

He's looking better this morning. Still delusional, but he's calm, articulate, and willing to accept assistance. He's breathing better and when he dozes off it looks more like actual sleep. I don't know if this will be a sustained upwards trend, but I'm hopeful.

He started chemotherapy on Tuesday. He gets one treatment per week for two weeks, then one week off, then repeat. In 6-9 weeks we'll know if it's working. The chemotherapy includes a steroid, and he's on an antiviral because the chemotherapy weakens his immune system. He's also getting Halidol for his neurological issues. And an antibiotic because he was running a fever for a little while.

For my hospital-related transportation problem: I am thinking about buying a new car, rather than a used one. I can afford it: I only live like a poor person, I am not actually poor. I don't have enough ready cash to buy one, annoyingly. I may look into getting a loan against my 401(k), to avoid paying third-party interest or early withdrawal penalties. I don't know if this will qualify or not.

Recommendations on cars are welcome. Pretty much all I want is a good cost-per-mile figure and cheap to insure. I do not need or want any fancy extras, or a sporty car or an SUV or anything. I am perfectly happy with small, reliable and efficient. -_-

Fromthe Wall Street Journal:

Ted Kaptchuk, director of Harvard's Program in Placebo Studies and the Therapeutic Encounter, and colleagues demonstrated that deception isn't necessary for the placebo effect to work. Eighty patients with irritable bowel syndrome, a chronic gastrointestinal disorder, were assigned either a placebo or no treatment. Patients in the placebo group got pills described to them as being made with an inert substance and showing in studies to improve symptoms via "mind-body self-healing processes." Participants were told they didn't have to believe in the placebo effect but should take the pills anyway, Dr. Kaptchuk says. After three weeks, placebo-group patients reported feelings of relief, significant reduction in some symptoms and some improvement in quality of life.

Which makes me go O.o.   In some cases noted in the article, the placebo effect is powerful, too. It makes me wonder if some of the people who cope with nasty side effects from drugs might be better off with a placebo.  Like, actually better off taking a sugar pill that they know is a sugar pill, rather than (a) doing nothing or (b) taking a drug with bad side effects.
o.O

Posted via LiveJournal app for Android.

Yesterday's Wall Street Journal had an opinion column on health care reform.  The WSJ has had many many way too many columns on health care reform lately, some of which have good ideas and many of which are about how President's Obama's proposals will RUIN US ALL and also KILL BABIES.  No, no, they're not nearly that bad, and I am being grossly unfair.  I'm sorry.  I don't actually like the proposals being tossed around in Congress either, but I still get tired of hearing the same points harped on over and over again.

Anyway, the linked essay does some of that harping, but it also had eight  ideas to offer for health care reform.  The interesting thing about these ideas is that they aren't necessarily incompatible with a government option for covering the uninsured. Five didn't even seem controversial to me, either; I'm quoting those below and adding my thoughts.

Remove the legal obstacles that slow the creation of high-deductible health insurance plans and health savings accounts (HSAs). The combination of high-deductible health insurance and HSAs is one solution that could solve many of our health-care problems. For example, Whole Foods Market pays 100% of the premiums for all our team members who work 30 hours or more per week (about 89% of all team members) for our high-deductible health-insurance plan. We also provide up to $1,800 per year in additional health-care dollars through deposits into employees' Personal Wellness Accounts to spend as they choose on their own health and wellness.
Money not spent in one year rolls over to the next and grows over time. Our team members therefore spend their own health-care dollars until the annual deductible is covered (about $2,500) and the insurance plan kicks in. This creates incentives to spend the first $2,500 more carefully. Our plan's costs are much lower than typical health insurance, while providing a very high degree of worker satisfaction.

This is one of my favorite options for healthcare reform. I hate the way my insurance company is involved in every single bloody transaction involving a physician.  I don't want to contact my health insurance company every time I need stitches for a cut or a tetanus shot, any more than I want to call my home insurance provider every time I break a window.  It just adds a layer of bureaucracy, expense, and inefficiency to the process.  Current tax policy doesn't subsidize home insurance or home repairs (well, in general), so it doesn't affect my decision to have a high deductible or a low deductible.

But current tax policy does subsidize employer-provided health plans with low deductibles, and makes it a pain in the butt if you want the same subsidy for an HSA/high deductible combo.  So it's trying to corral me down a low-deductible path that I dislike, and I don't see why the government should care whether I pay for my health care by paying $4000 a year for a low-deductible policy, or by paying $1200 for a high deductible one and covering the deductible with cash when I use services.  OK, the former is better for insurance companies, but I didn't think the point of this exercise was to make insurance companies happier.

Equalize the tax laws so that employer-provided health insurance and individually owned health insurance have the same tax benefits. Now employer health insurance benefits are fully tax deductible, but individual health insurance is not. This is unfair.

This is another thing area of tax law that I don't get.  Why does the government want to subsidize my health care if I get it as a benefit from my employer, but not want to subsidize it if I buy it on my own?  I'm guessing that it's based on an argument that goes something like this: "People are short-sighted, so they won't buy health insurance if left to their own devices.  So we want to encourage employers to provide it for them by subsidizing employers-only.  We can't offer the same subsidy to individuals, because then employers would lose the ability to tout insurance coverage as a better benefit than offering additional salary."

I guess that argument makes some sense.  I don't agree with it, but it's not as nonsensical as "high-deductible policies combined with HSAs should be hard to get compared to low-deductible policies."

Repeal all state laws which prevent insurance companies from competing across state lines. We should all have the legal right to purchase health insurance from any insurance company in any state and we should be able use that insurance wherever we live. Health insurance should be portable.

I'm sure there is some reason to force insurance companies to offer policies in only their own state, but I don't know what it is.  Anyone?

Repeal government mandates regarding what insurance companies must cover. These mandates have increased the cost of health insurance by billions of dollars. What is insured and what is not insured should be determined by individual customer preferences and not through special-interest lobbying.

This goes with "I like high-deductible policies so neither I nor my doctor has to deal with insurance companies as much"; insofar as government legislates such policies out of existence, I'm annoyed by it.  But here I can see counter-arguments of "insurance can be insanely complicated if you let companies offer whatever they want, and then people won't understand what they want".  So I'm happy to see government regulation (no, really!) that forces standardization on insurance companies, especially standardizing the way benefits are explained.  I'm not wild about legislating products out of existence, though.  "No, you're not allowed to buy an insurance policy that doesn't cover X, even if you want to." OTOH, some products are especially pernicious (to use a facetious example: insurance that is automatically terminated if you get sick).  Loans charging 100% annual interest were legislated out of existence in the US*, not noticeably to the detriment of either consumers or lending institutions, so I'm not willing to say "no, never ever do that it's always bad".  It isn't always bad.  But I do think it should be done sensibly; if a type of insurance could be purchased by a rational person in a given situation, even if such people only make up a small fraction of the population, it ought to be legal.

* Yes, yes, some payday loans have effective annual interest rates of more than 100% when considering the fees and the short duration of the loans.  You know what I meant.

Make costs transparent so that consumers understand what health-care treatments cost. How many people know the total cost of their last doctor's visit and how that total breaks down? What other goods or services do we buy without knowing how much they will cost us?

This is another area where some government regulation to standardize forms would probably be for the best.  I mean, it would be ideal if doctors and insurance companies would voluntarily form a board to set standards of how they're going to explain costs and what's covered by insurance and what isn't on any given bill.  For that matter, it'd be nice if insurance companies would set a standard amongst themselves for how medical providers filed claims, because that is a total nightmare for providers of every kind.  But if they're not going to do it on their own, maybe the government needs to threaten to do it to for them.

None of these seem particularly earth-shaking or partisan to me. Any given person might not think they'd help much, but it doesn't seem like anyone would accuse them of KILLING BABIES or RUINING US ALL, or even having the potential of doing much damage to the existing industry.

I also don't expect any of them to happen.  I'm not entirely sure why they won't.  Maybe it's that they're not earth-shaking enough: the people who want a change want a SOLUTION, not an incremental thing that they think will only help a little if at all.  And if you want a solution to all the country's health care problems, maybe an incremental benefit looks like a bad thing, because they fear if the system gets to "good enough" then people will lose their will to get it to "perfect".

Maybe it's that they're too time-consuming to implement. "Repeal laws" is pretty easy, but standardizing thousands of individual bureaucracies is ... um ... daunting.  And expensive. Not only to create a good standard, but also to implement that standard across so many different companies.

Or maybe there are downsides to these ideas that I'm not thinking of.  What do you think?  Are there controversial aspects to these changes that I've missed, beyond the difficulties of political backing and setting standards?