Erik Westlund in Medium wrote a stunningly good piece on being a parent of a child with hemophilia in Iowa. He made five points that I want to highlight.
- How is this not a HIPAA violation by the insurer? The disease is rare enough that adding demographic and severity information allows for rapid narrowing down of who Wellmark may be referring to.
- Better products for very narrowly focused disease groups will be expensive. It’s worth it if the care is better
- Co-pay assistance programs by drug makers circumvent cost control efforts
- Big pools are needed for catastrophic care
- Even straightforward cases are expensive
The key chunk is here:
Nowadays, the standard of care for hemophilia patients is to “prophylax”, or in common parlance, “do prophy,” from a young age. You get an IV shot two or three times a week to prevent bleeds before they start. Improved treatment products and regimens have made hemophilia a more livable disease. Life spans are now similar to those without the disease and daily life for a kid with hemophilia often differs little from those unaffected.
This comes with a cost, however: factor drugs are expensive. Very, very expensive. My guess it that my son’s treatment costs somewhere between $100,000 and $200,000 a year. My son, however, is lucky. So far he hasn’t had an inhibitor, which is when the body reacts to factor treatment with an antibody. About 20% of hemophiliacs have inhibitors. Patients with inhibitors need a lot more factor, more frequently. The costs can add up fast.
I found this post from a patient/caregiver point of view to be stunning, humanizing and well worth the three times I read it.
Calling Rob Portman’s office again today. Any suggested talking points?
Sorry. Missed your post below.
A non mouse
Mental health issues and opoid dependence. He seems to respond to that.
Why don’t they just hire a loony Russian monk who practices hypnosis?
People always blow these problems out of proportion.
@A non mouse: Of course he responds to the opioid crisis since both of Mary Taylor’s kids are addicts. But she is against the ACA although both of her kids would be uninsurable with pre-existing conditions if they couldn’t coast on their rich contractor daddy’s company policy.
How do we even call, since we cannot critique a bill when we don’t even know what is in it. I called about transparency. The ACA markup was on CSPAN for weeks, and they will be voting on this with no one knowing what is in the legislation.
They should get rid of some of the co-pay assistance programs because they create perverse incentives. I say that as someone who uses the up-to-$100 co-pay coupon on EpiPen all the time. Eventually, CVS said “screw it, here is that generic one by that other company.”
@A non mouse: I re-read your comment and my response. I didn’t mean to snap at your useful comment. I am just frightened right now. And I am really annoyed with the smug twerp answering the phone in his Cleveland office. DC office switched to the answering machine at about 8 am.
@Sab: You had people answering phones in a DC office? Our Republican Senator has not had anyone answering the phone in the DC office for months so far as I can tell.
@Starfish: Only before the business day starts.
@Sab: I haven’t tried to call that early due to time zones. But maybe I should call ridiculously early and see what happens.
Thank you Mayhew Anderson. This is why there is insurance. This couple did everything right and they still face catastrophic expenses. And the insurance company spokesperson? How is this NOT violating privacy? There cannot be many teenage hemophilia cs in Iowa.
Lawyer here. HIPAA is pretty toothless. I probably receive a call per month from someone who learns that their medical information was improperly shared — usually a gossipy clerical staff person working in a medical office or a school nurse’s office telling coworkers or friends about someone’s medical information — but there is no private right of action to seek damages. Thus there is really no deterrence. All I can tell those callers to do is send a written complaint to the medical office and to HHS, which will go nowhere because (again) there is no private right of action and thus no incentive to actually train and police employees to quit gossiping.
@Starfish: I didn’t have any trouble getting through to Portman’s DC office yesterday. I was all set to leave a message, but when an intern answered on the second ring, I had to regroup.
I found that disheartening, really. The Autism Society FINALLY did something and sent out an email asking everyone to call their Congressmen yesterday to protest any cuts to Medicaid. When I got through so easily, it told me they weren’t being swamped.
But that should be expected I suppose. They’ve done no educating our community, a lot of people getting that email probably had no idea what it was about.
One day last month when I was in a particularly bad mood, I called the Autism Society hotline. It’s set up for parents who need help with things like accessing services, or have just received the diagnosis and don’t know where to start.
The woman who took my call was very nice but was clueless about the threat to Medicaid. It’s a little exasperating to explain to someone working for your national advocacy organization why Medicaid is essential and what the immediate issues are.
@MLC: So, yes, I agree with your assessment, but people underestimate the power of just exposing what happened in whatever forum they have access to. Which is to say, Yelp has its uses. Before resorting to Yelp, you should write to the doctor’s office giving names and dates, and copy the state medical board as well as using the complaint process at HHS. Also contact the state’s AG. You can also make a point of loudly stating the next time you go to the office that you do not want Nurse Ratchet to see you because she blabbed your confidential information to other people.
In addition to not having a HIPAA private right of action, most claims like this are unlikely to yield real damages. State laws do provide rights of action and most such actions are brought against co-workers and medical settings, and use HIPAA as the standard of care. In some cases, where there really are damages, these suits are effective. I represent regulated entities, and even those that don’t provide sufficient training will fire people who do this. Telling them is the first way to get the wheels spinning.
It is not actually clear to me that this constitutes a HIPAA violation. “A patient with hemophilia that costs $__ million annually” could be identifying at a county level, but probably not a state level. If you add gender and age you are definitely getting closer. If the condition is really rare, then it might be identifying.
@MLC: I’ve seen institutions get fined for confidentiality breaches. Does that happen at the federal or state level? The fines can be quite steep, and that gets the attention of institutions.
@Ohio Mom: Thanks for the heads up about Portman’s office–this is helpful. I’ve been dogging a friend who lives in your fair state to call, and to get his wife to do so, too. I’ll suggest they call the DC office if they can’t get through locally.
Hang in there, and thank you again.
I was gobsmacked at the amount of information that the Wellmark executive gave out on this case. I had to admit that I was more than a little surprised that this was not the biggest part of the story, and that it did not get much of a response from the media and even the commenters on this blog.
To me, insurance companies “blaming” large rate increases on unusual events is kinda par for the course. Whether it is home, auto, or health there is always something that happens that forces them to have to give up some of THEIR money to live up to their commitments to their customers. Boo hoo.
I guess their dream is to only cover people who never make claims, right?
@NorthLeft12: I think their goal or one of their goals is to get people to understand just how expensive medical care in the United States actually is. So many people, even in Congress, identify things like “fraud and waste” and “insurance CEOs” as drivers of health care costs when those things (especially the latter) represent a small fraction of costs no matter how highly visible they are. The real drivers are the high cost of services and medications, but especially hospital stays and the imaging industry, with drugs catching up fast. If I studied this further I would have a HIPAA opinion, but it’s not necessarily a HIPAA disclosure.
Medium is mostly an elite phenomenon. But this story is well-told and deserve a more common audience.
How can we get stories like this to the voters who can be persuaded to leave Trumpland?
Laura will likely not be punished for the HIPAA violation (we know these people personally), and a lawsuit from the teens family is unlikely to have much of a dent on Wellmark given the $12M per year they are going to save by exiting the individual market. From a PR move, it may well have been a deliberate trade on their part.
However, people should know that there is a significant ground shift taking place under Iowa right now. My mom (R-Iowa) has flipped to full single-payer advocate in the last few months and she indicates that she is not alone. This is not insignificant. The reason is that if the individual market in Iowa collapses, her husband will be uninsurable and he will die without that insurance. If that market fails, they’ll be forced to move, and the state they consider moving to will be chosen on the basis of how strong the individual market is in that state and how hard the state is working to protect it. California is currently their top choice (hopefully also for reasons other than our health insurance system).
My mom is well ahead of the curve on this given her position, but toward the end of the year when notices go out that people are being dropped from their policies and there is no place to go, those town halls are going to be very loud and very angry.
@? Martin: What did they do before the ACA? My brother did not have insurance for close to 20 years even though — and of course, because — he has a significant health condition. Fortunately for him, the medications for it are relatively cheap and he got by seeing a primary care physician who is also his personal friend.
ETA: But he still carries unpaid debt because of the hospital stay that resulted from his first seizures.
@Barbara: I saw your earlier post about your brother’s condition. While your Mom may not be a constituent of Scott Perry’s (York & Cumberland Counties), he has sponsored legislation for medical marijuana for epilepsy. That may make it worthwhile to let him know the impact of the AHCA on folks with epilepsy. He voted in favor of the AHCA in the house.
@Barbara: Please correct me if I am wrong: I was under the impression that only Providers (and by extension, office staff etc) can violate HIPAA? I ask b/c I have been insured across state lines by Anthem CA BCBS under former spouse’s policy. Anthem refused to forward my reimbursement to me (bad enough!), nor stop forwarding my medical reports to ex-spouse. Clearly, this can or could compromise my well being in many, perhaps grave, ways. Despite trying multiple avenues, I had no redress.
I also understand this is a common occurrence in health insurance/divorce issues. By comparison, MA state law allowed me to insist that all records, statements, reimbursements and the like be routed to my own address.
I can only imagine the situation in the case of a person at risk of harassment or physical assault by a former spouse, regardless of court rulings.
On a related note:
My Rep, Brad Wenstrup, was just honored by the Hemophilia Federation for his work in introducing the Patient’s Voice Act (H.R. 2077). This bill, as I understand it, would require employer-sponsored health plans to provide a more clear and fair process for situations where doctors have good and important reasons not to employ the “step therapy” method. Step therapy is when insurance companies insist that cheaper treatments are tried first, and it can be very difficult to get the insurance company to approve exceptions to this protocol (did I get that right, David?). I gather this is often a bone of contention in hemophilia treatment.
What I find amusing, in an ironic way, is that Wenstrup is always going on about “getting government out of health care,” and here he is, sponsoring a bill to put government in health care, albeit a small corner of health care.
When I explained this to his intern during today’s call, I think I heard a light bulb turn on over her head.
I know that when teaching someone something new, the material usually has to be presented several times before it is completely understood (there is a correlation between IQ and the amount of times new material needs to be presented, but it also depends on how much prior knowledge of the subject area the student already has). I think I can hope that today was one of those necessary introductory presentations in the intern’s ongoing education.
@amygdala: Your friends can try any of Portman’s offices (DC, Cincinnati, Cleveland, Columbus, Toledo) listed on the bottom of Portman’s web page. If they are looking the page up on their phones, they can click on the phone number and the number will be dialed automatically.
On days when no one anywhere seems to be answering the phone, there is an 800 number for constituent problems (I guess things like dealing with governmental agencies?) and they often pick up the phone when no one else does.