Sunday, September 30, 2012

State of Pennsylvania Imposes 5% Autism Income Tax

Families who have children with autism and live in the state of Pennsylvania have had a pretty good deal for a while now.  That's because Pennsylvania is one of the few states that has provided free medical coverage called Medical Assistance (MA) to children with severe disabilities, such as autism, regardless of parental income.  The really nice thing about MA is that it not only covered normal medical expenses but also paid for evidence-based autism specific treatments such as speech therapy, occupational therapy, and (most importantly) ABA.

The MA program isn't perfect by any means.  It involves a lot of paper work, a lot of red tape, and the only real way to navigate the system is by talking to families that have been in the system longer.  And when it comes to the autism specific therapies, another related group gets involved in managing your child's treatment down to having to approve each goal and method on your child's treatment plan.  So it isn't like MA is some sort of all you can eat buffet - each and every autism specific treatment has to be medically necessary, completely supported by the available evidence, and you have to be a strong advocate for your child's needs.

Then, each and every year, you have to reapply for  the benefits and most years you have to provide a new medical evaluation proving that your child still has autism.  Even though managed care side requires periodic evaluations and treatment plans and is almost involved in the day to day treatment of your child.  So once a year you have to spend several weeks trying to get a hold of the person assigned to your case (who changes constantly and is virtually impossible to get a hold of) and making sure that they have all of the paper work they need, haven't misplaced anything, and will process it all before the date when the services will be cut.

Or, in other words, the MA program is exactly like most other bureaucratic government run programs. But by and large the system generally works.  It can be a little bit of a pain to navigate, but once you learn what you need to do it works decently well.  After dotting each i and crossing each t, jumping through multiple hoops, and standing on your head while rubbing your stomach, you can access some rather decent services for your child and the only cost is your sanity.

Seriously, I don't have any major complaints with the system besides the bureaucracy and I am extremely grateful that it exists.  We would not have been able to afford even a fraction of the life-changing therapy that my children have received over the years without this system.  And just to be perfectly clear here, we have good private health insurance that covers a lot of my children's medical needs and I make a decent living.  So it isn't like we simply lack the means to provide these therapies but rather that these therapies are so expensive (40k+ per year per child) that even fairly well off families have no chance.

But now, in an effort to save a couple of bucks, the State of Pennsylvania has decided to impose a copayment on certain services provided by MA to families that earn more than 200% of the federal poverty level.  This copayment will be up to 20% of the cost of the services and capped at 5% of a families gross monthly income.  Since the base price of autism specific services is so expensive, all but the wealthiest families are going to hit that 5% cap.

At first glance this copayment might seem perfectly fair.  After all, no one really has the right to expect certain services from the government and most families whose children have autism receive far more benefits from the state than they pay in taxes.  But in reality what this copayment is going to do is mean that many children with autism are going to lose services because many families are not going to be able to afford the copayments.

Lets consider a few examples.

A single mother who has one child with autism will be hit with the copayment if she makes more than 30,260 per year.  At that level of income, she would be expected to pay about 1,500 per year in copayments or about 120 per month.  A family of five that earns more than 54,020 would be expected to pay 2,700 per year or about 225 per month.

I don't think I need to explain to other autism families about the financial burden that having a child with autism can cause.  Even if basic medical costs and the core autism specific treatments are covered (as is currently the case in PA), there are still very substantial out of pocket expenses that directly relate to autism each and every month.

And that doesn't even begin to take into account the financial opportunities that are lost to autism.  There are many families where one of the parents has to forgo working to take care of the children and there are many parents who are unable to take advantage of professional opportunities because of the limits that autism imposes.

I don't want to sound like I am complaining but this is reality of having children with autism.  I wouldn't trade my children for anything (except maybe versions of them that could talk and slept at night) but providing appropriate treatments and supports is very expensive to begin with.

So when the State of Pennsylvania comes in and tells me that they want 5% of my annual gross income because that's my "fair share", I just have to laugh.  My family, like most other autism families that I know, is already spending more than we can afford in an effort to give our children the best possible future.

No, what this new copayment is is basically a new income tax on families that can't really afford it.  To put this new tax into perspective, the existing state income tax stands at 3.07%.  This new income tax is going to more than double the effective state income tax, raising it to 8.07%.

If this new charge was really meant to be a copayment rather than a new tax then, it should work like other copayments work.  If any other insurance company came in and charged a premium for the plan and then, when asked about copayments, said  "it depends,  how much do you make" then they would likely loose most of their customers.

Lets not forget that the purpose of health insurance is to spread the cost around to everyone that participates in the insurance pool.  Everybody pays a premium, everybody has the same copayments, and the pooled premiums are used to pay for the health expenses.  Some people will have very few expenses and will pay in premiums than they get back in coverage and some people will have extreme expenses and will get far more back than they put in.

As a tax payer, I already pay my premiums on both the state and federal level (the MA program receives money from the federal government) in the form of income tax.  I am not against copayments as long as the amounts are reasonable and applied fairly.  But the way that this copayment is being implemented (more on that in a bit) makes it clear that it is a targeted charge on a very narrow group of people.

Of course the counter argument here is that I always have a choice and don't have to pay the copayment.  I could choose to not have the services for my children, I could choose to go with less expensive services, or I could choose to go with a different type of health insurance.

But all of these options are just illusionary and there is no real choice.

As a parent, I would be negligent if I did not do everything in my power to provide medically necessary services for my children.  As a consumer, I have extremely little ability to change the cost of services or to pick less costly services.  When you have to spend your time fighting to get any services let alone appropriate services, you have no ability to haggle over the price.  And as for a choice of health insurance, there is no choice.  The choice is between no services or Medical Assistance.

So basically the "choice" comes down to not having medically appropriate services for my children or paying an extra 5% of my gross income to the state every year.

The end result here is going to be one of two things.  Either a family will be able to afford this extra tax and continue services for their children or they will be forced to cut services for their children.  My family may be able to cut enough other things that we will be able afford this new tax and continue services but I suspect that many other families won't be able to do so.

I am sure that the State would disagree with me characterizing this copayment as a new tax.  In fact, they say that "targeting co-payments based on ability to pay will ultimately protect the safety net and allow us to continue to effectively serve Pennsylvanians now and well into the future."

The problem is that the State's own numbers belie their own assertion.

According to the numbers that they provide, providing these disability specific services costs taxpayers "approximately $700 million a year".  But the potential savings from this copayment are approximately $4.3 million per year or about 0.6% of the total spent.

When you put these numbers in terms of the entire yearly MA budget, the result is even more absurd.  The MA program cost $16 billion for fiscal year 2012-13, of which roughly $8 billion was spend on people with disabilities (all disabilities, not just autism).  So terms of the amount spent on all disabled people we are talking about 0.05% of the budget.  In terms of the entire budget we are talking about 0.03%.

I don't see how pushing 0.03% of the total expenditures back onto families will "ultimately" protect the system.  If the goal is to protect the system you might need to start were you actually are spending a noticeable amount of your budget.

But I can see how pushing that amount back onto families who are already financially struggling will result in a loss of services to disabled children.

And then there is the matter of how this copayment was announced (see if you can find it in there), how public comments on the copayment were basically ignored, the extremely short time period between announcing the copayments and them taking effect (about a month), and the fact that other ways that the State could better offset the costs that are already active.  For example, PA Act 62 requires certain private insurance to pay up to 36,000 per child per year for ABA services.  If that act were actually implemented and fully enforced that could save the State over $30 million a year.

There is also the little matter of implementation.  This copayment is supposed to become active on Monday, October 1st (yes, tomorrow)  for new families and a month later on Nov 1st for existing families but there is almost no information a family can use to figure out how much of a copayment that they will be hit with.  Under the new system, each provider will be responsible for independently collecting the copayment for their services and there is some magical and yet to be determined method for coordinating charges across providers to make sure that a family isn't overcharged.

My children have services spread out across three or four providers and I have absolutely no information about how they bill for services, how much of a copayment will be charged for each service, nor is there any system in place for me to question the charges.  So when (not if, when) I receive bills that total more than the 5% of our monthly income, do I pay the bills and try and get the money returned in the future or do I try to dispute the charge and constantly risk service disruptions and my credit rating?

In theory I could contact the state department that is responsible for the program but since they can't even get their phone system working well enough for me to be able to reach them via phone and the chance of an email or regular letter being answered  is about a million to one, I am not going to hold my breath.

And even when you do get a hold them their idea of customer service is somewhat lacking.  I once had the person assigned to my children's case tell me that she gives priority to children who have "real problems" and since my children just have autism they would just have to wait for her to get around to their case.

In other words, the actual implementation of this new copayment is likely to be a complete and utter mess and it is going to take a substantial amount to keep track of it all.  And that's just want families whose children have autism need, one more large problem to deal with.

Friday, September 14, 2012

Revisiting the Rhetoric About the Pertussis Epidemic

A few years back, I talked quite a bit about how pertussis (aka whooping cough) was becoming more common again and what the reasons for it might be.  Back then, the reason du jour in the mainstream media and certain parts of the autism world for the epidemic was that the more and more parents were refusing to give their children the pertussis vaccine which was leading to a decrease in herd immunity and allowing pertussis to make a come back.  This was the reason used in spite of the fact that there was evidence, even back then, that other factors played a larger role in the pertussis epidemic.

Well, lets fast forward to today and a study1 that was just published in the New England Journal of Medicine that suggests that the main cause of the pertussis epidemic is that the vaccine induced immunity doesn't last nearly as long as was previously thought.

The old idea was that the vaccine induced immunity gradually faded over the years so that a person who was fully vaccinated would only need a booster shot every 8-10 years or so to maintain their immunity.

The new idea is that the vaccine induced immunity starts fading quickly after the last vaccine dose.  According to the study, the odds of contracting pertussis increased an average of 42% per year.  So instead of needing a booster in ten years to maintain immunity, this finding suggests that the immunity is almost gone ten years out.

But that ten year figure assumes that the vaccine is at least 97% effective in the first year.  If, as other recent results have suggested2, the vaccine is much less effective than previously though, the immunity would fade even faster.  If the vaccine were 90% effective to start that would mean the protection would be cut in half in about four years and largely gone in six years.

These numbers are just approximations and are going to vary based on a large number of factors but I think the overall point is clear - the current pertussis vaccine isn't nearly as long lasting as was previously thought.  The data from the outbreaks going on around the country also supports this idea.  I'm not going to go into details but, as an example, roughly one third of the cases in outbreak in California in 2010 were in mostly vaccinated children from 5 to 7.

So the main reason that pertussis is becoming more common isn't that parents are refusing the vaccine but rather that the vaccine doesn't work as well as it was thought to.  While this reinforces the idea that vaccines play a critical role in protecting the population from serious illnesses it also serves as a reminder that vaccines aren't sacrosanct.  A vaccine should not be assumed to be safe and effective just because it is on the vaccine schedule.

This also serves as a reminder that we should wait for actual data and not jump to conclusions.

If you are interested in further reading on the subject there is the study abstract here and there are articles in Time, Web MDThe Wall Street Journal, ABC News, and CBS News.


1. Klein NP, Bartlett J, Rowhani-Rahbar A, Fireman B, Baxter R. Waning protection after fifth dose of acellular pertussis vaccine in children. N Engl J Med. 2012 Sep 13;367(11):1012-9.
PubMed PMID: 22970945. DOI: 10.1056/NEJMoa1200850

2.Witt MA, Katz PH, Witt DJ. Unexpectedly limited durability of immunity following acellular pertussis vaccination in preadolescents in a North American outbreak. Clin Infect Dis. 2012 Jun;54(12):1730-5. Epub 2012 Mar 15.
PubMed PMID: 22423127 DOI: 10.1093/cid/cis287

Saturday, September 8, 2012

Rare and Potentially Treatable Form of Autism

A group of researchers has identified a possible biological mechanism that might be responsible for a rare form of autism. In these cases, mutations of the BCKDK gene inactivates an enzyme that is necessary for breaking down certain types of amino acids.  These essential amino acids cannot be created by the body and can only be absorbed from food.

It isn't clear exactly how the absence of these essential amino acids leads to autism however there is some limited data from mice and anecdotal data from parents that providing appropriate supplements can restore the normal level of these amino acids and lead to improvements in the symptoms of autism.

If all of that sounds a little confusing, think of it this way.  A small genetic mutation prevents you from absorbing critical substances from your food and the long term lack of these substances causes autism.

If you are interested in more information about the subject, there is a good write up over on Questioning Answers, there is an article in Nature describing the finding, as well as the actual paper.  There is also some details about what the the BCKDK gene does and prior links to autism here and here.

At the risk of sounding like a broken record, I think it is going to become increasingly clear over time that many, if not most, cases of autism are going to caused by a process like this.  We are going to find that there are disruptions to critical biological processes that lead to the symptoms of autism and that by correcting these biological disruptions we will be able to help people recover from autism.

We are going to find that the behaviors of autism are a side effect (co-morbid, if you will) and that the real problem is the biological disruption and the damage that causes.  So instead of the brain being wired "differently" because that it is written into the person's genes, it wired differently because some process is preventing it from developing normally.

However, as I said before, a critical part of a model like this is that recovery will be a two step process.  Simply correcting the underlying disruption will not instantly remove the symptoms of autism.  It will take time for the body to recover from the damaged caused and it will take time for old behaviors to be unlearned and new skills to be learned.

But the important part is that autism can be successfully treated.  The key is going to be finding what the disruptions are in a specific person and finding a way of correcting those disruptions.

Wednesday, September 5, 2012

The End of Junk DNA

In case you were living under a rock today I thought I might point out the major genetic news of the day.  The idea that the majority of our genome (98%) is "junk dna" that does nothing meaningful because it isn't directly involved in creating proteins has been overturned.

According to a gaggle of papers released today (six in Nature alone), it turns out that this "junk" actually plays a very important regulatory role in controlling how and when the non-junk dna does its job. Or, as an article on Nature puts it -
One of the more remarkable findings described in the consortium's 'entrée' paper is that 80% of the genome contains elements linked to biochemical functions, dispatching the widely held view that the human genome is mostly 'junk DNA'. The authors report that the space between genes is filled with enhancers (regulatory DNA elements), promoters (the sites at which DNA's transcription into RNA is initiated) and numerous previously overlooked regions that encode RNA transcripts that are not translated into proteins but might have regulatory roles.
Or, as I would put it, the 2% of our DNA that was thought to be significant is only a small part of the picture.  What matters more is whether that small part is turned on or off and when these transitions happen.  There doesn't have to be a known mutation in a known gene for a part of the biological processes in a person's body to be messed up.  There are many things that can control how genes are turned on or off and today we learned of yet another major one.

There are news articles in all of the major outlets such as the NY Times, The Washington Post, The Wall Street Journal, and Business Week just to name a few.  And there is an excellent resource on the Nature site as well.

Time will tell what this means for people with autism but I predict a renewed interest in "junk" genetic mutations associated with autism.   Which will be a little bit of a shame, really, since the idea that autism is "genetic" has almost been put out to pasture.  First it was mutations are strongly associated with autism, that came up largely empty, then it was copy number variations are strongly associated which was another bust, now it is going to be junk dna causes autism.  I think this avenue of investigation is going to be a bust as well but at least it might get people looking at genetic regulatory mechanisms which is where I suspect the problem actually is.

I guess we will have to wait and see what happens.