A drug called Spinraza could save my life. Will Michigan let it?

Kristen Milefchik

Kristen Milefchik is an advocate for those with disabilities who has worked on recipient rights and transit issues in southeastern Michigan.

I should be happy.

I’m 36 years old and have been in a wheelchair all my life due to a neuromuscular condition known as spinal muscular atrophy. I’ve accomplished a lot. I’m the mother of a beautiful 14-year-old girl. I’m an advocate for those with disabilities, am working on my master’s in social work and was named Ms. Wheelchair Michigan 2015.

I’m elated that disability advocates helped shoot down Congress’ replacement for the Affordable Care Act, the Better Care Reconciliation Act, which would have cut Medicaid funding that help millions of those with disabilities live independently and be integrated socially and culturally with the rest of the world.

And I’m excited that there’s now a treatment for my condition. It’s called Spinraza and it was approved by the U.S. Food and Drug Administration in December.

The results have been mind-blowing. A girl with the same type of condition as me moved a foot she hadn’t been able to move in years just one day after her first injection. Another girl in Michigan is able to kick her legs and hold her head up on her own after being unable to do so before the drug.

Eight months after federal approval, though, only a handful of those with SMA in Michigan have been treated by the drug. That’s because it is so expensive. Spinraza costs $75,000 per injection, meaning treatments cost $750,000 in the first year and $375,000 in subsequent ones.

So far, those who’ve had the treatments have private insurance that paid for the injections. Like many states, Michigan is considering whether Medicaid should cover the drug. One proposal before state regulators would only pay for the treatments for those with SMA I.

I have a separate condition, SMA II, and rely on Medicaid. The proposal before regulators would deny me access to the drug.

I can’t sit up, get out of bed, dress or go to the bathroom without assistance. My lungs and muscles are so weak I get pneumonia easily and it’s hard to swallow thick foods. Many with my condition rely on ventilators. This treatment could reverse all that.

Don’t get me wrong. I wouldn’t take the drug if it meant I would lose my cultural identity as a disabled person. It’s shaped my whole life and perspective. My involvement in the disability community is invaluable.

But if this drug gave me a little bit longer on Earth? Long enough to watch my daughter become a mom? Or watch a grandchild or two grow up? Or spend a few more years getting wrinkly with the love of my life?

Yeah. I would take it.

But our current healthcare system forces those with disabilities into an agonizing catch-22. Private insurance will pay for drugs like Spinraza, but it won’t pay for specialized, non-medical care such as personal care attendant services that help people like me get out bed, get dressed and go to school or work. That’s where Medicaid comes in, with so-called home and community-based services that would have been gutted by Congress’ Better Care Reconciliation Act.

Many of us would like to work. We’d like to contribute. We’re not lazy. But we need to survive. Getting a job with private insurance usually means losing Medicaid – and its home-care benefits that are necessary to survival. A single-payer, universal healthcare system would end such fragmented coverage and end the difficult choice so many of those with disabilities face.

But because we live in a country where insurance companies have more power than people and even our government, precious time is wasting that I could be using to get physically stronger.

Independence and freedom are synonymous in my world. But I and my disabled friends have to fight for every improvement every step of the way. It’s 2017. Sci-fi writers predicted we’d live in outer space. But we can’t even make sure our people have access to life-sustaining drugs?

So no. I’m not happy today. I’m disappointed that we can’t see the insanity that if you can’t afford to be saved you don’t have a right to live.

Michigan Department of Health and Human Services officials are expected to announce a policy decision soon on whether Medicaid will cover the drug.

I and many others with SMA are clinging to hope.

Will this be a rare occasion when compassion and ethics prevail over the bottom line?

Bridge welcomes guest columns from a diverse range of people on issues relating to Michigan and its future. The views and assertions of these writers do not necessarily reflect those of Bridge or The Center for Michigan.

About The Author

Kristen Milefchik

Kristen Milefchik is an advocate for those with disabilities who has worked on recipient rights and transit issues in southeastern Michigan.

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Comments

Dorothea Bawks
Fri, 08/11/2017 - 12:36pm

As a former advocate for people with disabilities through Disability Network Oakland and Macomb, I applaud Bridge magazine for this article. It truly highlights the absurdity of any current health care plan we use today and our need for a single payer health system. Incredibly important article for thousands of Michiganders seeking fulfillment of the promise of quality of life and independence!!

Maureen Braun
Fri, 08/11/2017 - 12:57pm

I had the pleasure of caring for this amazing woman for a while. She lives life to its fullest and I totally agree with her.

Eric
Fri, 08/11/2017 - 8:04pm

Definitely hoping they choose to cover the drug!

Kevin Grand
Sat, 08/12/2017 - 3:36am

"A single-payer, universal healthcare system would end such fragmented coverage and end the difficult choice so many of those with disabilities face."

That's right, it would.

But not in the way that you've been misled to believe.

Universal Health Care (just like they have in Britain), will determine that you are too cost prohibitive to treat, and that the most "humane" course of action will be to simply let you "die with dignity".

It's not discussed very much over here (even here on The Bridge), because it ruins the narrative that proponents of single payer are trying to push on Americans. But, you can read about the latest "success" from those imposing universal health care on their citizens right here.

http://www.dailymail.co.uk/news/article-4738946/Little-Charlie-Gard-s-pa...

Be VERY careful for what you wish for.

Kristen Milefchik
Sun, 08/13/2017 - 10:54am

Kevin,
I am so disheartened by this tragedy you shared. I am assuming you are a family member, by the last name. I appreciate the feedback on this column of mine and do not mean at all to not give it the weight it deserves. However, I still have to disagree that what we have in America is somehow "better" than what some places with single payer, universal healthcare coverage have. In the U.S., those who can't afford the state-of-the art drugs or treatments don't make it either. People who can't afford great health insurance, like millions of adults with significant disabilities, do die all the time in the U.S... I'm sure you know this. And adults with significant disabilities, like my own, are not always able to work or, in turn, get great insurance, and definitely don't want to do so at the expense of losing the home and community based services that ALLOW them to get out of bed, work, if they can, and to just live. That is the problem that must be fixed.

Kevin Grand
Mon, 08/14/2017 - 11:21am

True, Kristen, the problem must be fixed.

However, how does single-payer actually address the issue with exponentially increasing costs (far greater than inflation), when all it does is spread those costs over a wider area?

That's no solution, because you still have rising costs that haven't been addressed.

And why aren't we reading about actually reining in (or even ...gasp, lowering) health care costs ?

I know, that is a rhetorical question. Hospital management chains, Big Pharma, the Health Insurance lobby and Trial Lawyers ALL have the ear of elected officials. Campaign finance reports easily bear this out. This is why the republicans were able to easily rope-a dope Americans into thinking that they were going to fix things several days ago. Despite all of the political theater, they are not going to allow that donor gravy train to dry up anytime soon.

The other problem with single payer is the actual quality of care.

How many Americans do you know about who have left the country to travel into Canada or Europe for treatment?

I can't think of any.

Can you?

Anytime you put bureaucrats in a position to make decisions, things go south, sadly even here in America.

http://www.cnn.com/2015/09/02/politics/va-inspector-general-report/index...

One last point, even though our last names are similar, there is no family relation.

grendelkhan
Tue, 08/15/2017 - 9:14am

Reducing costs is hard. It's especially hard when people demand access to drugs at any cost, and then wonder why their premiums go up. Your options are, so far as I can tell, ever-increasing premiums or the possibility of no access (at least until generics are approved). You can read a bit more about attempts to control costs here.

https://www.wired.com/story/fighting-high-drug-prices/

In general, if you'd like to know more about high costs in medicine, ProPublica has an excellent series. But you won't find evil bureaucrats steepling their fingers, just misaligned incentives, unexpected consequences and, honestly, people who want the best treatment possible. Not something 90% as good for 10% of the cost--the absolute best.

https://www.propublica.org/series/wasted-medicine

There's an estimate here that almost one and a half million Americans traveled outside the country to get medical care last year. Many popular destinations, like South Korea and Costa Rica, have universal healthcare. (Others, like Taiwan, have something like Obamacare but more so.)

https://www.patientsbeyondborders.com/medical-tourism-statistics-facts

Kevin Grand
Wed, 08/16/2017 - 7:53am

Of the countries on that list and the procedures being cited for people leaving America for treatment (even though we are one of the cited travel destinations), I'm going out on a limb here, and doubt that very many people will be traveling abroad for much more than the cosmetic surgery and weight loss procedures. Even the people traveling for Cancer treatment are doing so as a last resort.

And then when you couple in the waiting times for people in their own country, I highly doubt that someone just getting in from the airport will be bumped to the front of the line for treatment.

https://www.theguardian.com/society/2017/jan/13/193000-nhs-patients-a-mo...

Again, if you think that the government can do a better job of managing your health care for you, be VERY careful for what you wish for. Politicians really don't care if you live or die, so long as you vote for them while you can.

https://www.thestar.com/news/gta/2016/04/27/sharons-story-trip-to-buffal...

Judy
Mon, 08/14/2017 - 7:56am

The controversy about Charlie Gard's treatment concerned whether the state or the parents had final authority, and over what was in his best interests. Reasonable people can disagree about both. But it had - nothing! - to do with single payer, or with the cost of his treatment.

Kevin Grand
Mon, 08/14/2017 - 11:37am

Anytime the government thinks that it has more authority over parents regarding the health care of their children (to the point of essentially taking them hostage), that should concern everyone.

That's only one end of the equation, Judy.

Don't think for a minute that some unaccountable bureaucrat will take notice that a patient can speak and make decisions for themselves. How the government treats American Veterans under their care (see link above) should put that fallacy to rest.

And both examples are what you can come to expect under government ran health care.

R.L.
Sun, 08/13/2017 - 8:39am

Get a handle on the price of the Epi Pen. a potentially life saving application. Was 100 dollars now over 500. That is a crime. Peace R.L.

Rich
Sun, 08/13/2017 - 8:59am

Of course many people will want you to have the drug, because it is paid for with OPM (Other People's Money). Just how much can OPM support, or are OP willing to increase their taxes. Big article this morning in a Bridge sister publication, the Detroit Free Press, how, in the next 4 years Michigan will be facing huge decisions on how to cope with a 20% to, as some extremists suggest, will be a 50% cut in the State general fund budget. How does one balance the cost and needs of many vs. the extreme cost of a few in balancing whether to spend the limited amount of money available on potholes or drugs. After all, every dollar the state has comes from the pockets of its residents.

Kristen Milefchik
Sun, 08/13/2017 - 6:00pm

Yes, but not just Michigan taxpayers. Federal funds pay for a lot of Medicaid covered care like home and community based care because federal dollars match state dollars. I get it still comes out of taxes and some may not think that is fair, but I don't think it's fair for people who didn't ask to be born with progressive, muscle wasting diseases get punished for it either... Perhaps tax reform that doesn't allow there to be such a monstrously huge gap between the top earners of wealthy corporations and their lowly workers who break their backs working 40+ hours a week and are still living under the poverty line would help? There's enough wealth to go around...it's just all concentrated in a miniscule percentage of the population's hands and not enough of them want to share. Some do though, and are even willing to admit that the way things are being done now is not right - https://www.change.org/p/congress-not-one-penny-in-tax-cuts-for-milliona...

Jen O
Sun, 08/13/2017 - 5:05pm

Hello Ms. Milefchik. I have sent you a PM, on your FB page.

Matt
Sun, 08/13/2017 - 10:31pm

The problem is one of relative choices. Can we do more good with a dollar (or a half a million) , spent in one way or spent in another. What choices save more lives, Spinraza or the state spending on some other medical treatment. Does the fact that something can be treated automatically mean it should be? But these are our dilemmas, Good luck.

Carl Ver Beek
Mon, 08/14/2017 - 9:10am

Those administering Medicaid benefits have an unenviable responsibility to balance the interests of competing values. This payment would reduce the amount remaining in the Medicaid budget for other benefits. The General Fund in Michigan is not a blank check. I understand why she wants it, but government cannot be expected to give everybody what they want. A single payer program would face the same dilemma.

We need to prioritize the Medicaid benefits ( and the budget) based on clinical effectiveness and cost effectiveness as Oregon has done for 25 years.

grendelkhan
Tue, 08/15/2017 - 9:02am

If anyone's curious about how countries with single-payer systems balance between exorbitant prices and access for treatment, they have organizations that determine how much a drug is actually worth, and refuse to pay more than that for it. Attempts to do the same in the United States are rudimentary at best.

https://www.wired.com/story/fighting-high-drug-prices/

The US's system is that people with will lobby to have their insurers pay whatever the manufacturers ask, insurance gets gradually more expensive, and more and more people can't get access to the drugs they need.