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  • Standing up for Biogen

    Posted by kelly-miller on January 20, 2019 at 11:43 am

    I receive emails from a group called Change.org. Some of you may know that this group sends out requests for signatures on petitions for people who are in unusually difficult situations and need something done by lawmakers. Sometimes the petition is asking to make a new bill to be taken to Congress for voting, and sometimes it’s a request for signatures to change an existing law. The email has a link to the website for Change.org where you can read about a particular story regarding someone’s request. This method has been very successful in bringing all sorts of things to the attention of our Representatives that might not otherwise have gone across their desks.

    Here’s where my problem starts. I often click on the button taking me to Change.org from my email in order to see what story is being highlighted for that day. I have signed several petitions that I strongly supported, and I have bypassed several petitions because I didn’t agree with their viewpoint. A few months ago I came across the campaign of a young girl’s father. Her name is Zahra, and her father has written a petition to Biogen asking them to either reduce the price for Spinraza or somehow make it available to Zahra … “before she dies!”

    Zahra was diagnosed with SMA type II when she was 16 months old. She is currently 6 years old. The petition shows pictures of a very cute girl who has the look of a young child with SMA. They have shown pictures of her in her wheelchair, standing with her back brace & leg splints on at the top of a set of stairs, and being held to look out a window with her grandmother. Her father narrates the story, telling us that her body is deteriorating by the minute, “… which is a terminal, degenerative disease, that takes away a child’s ability to walk, stand, sit, eat, breathe, and even swallow.” Her mother gives another heartfelt perspective saying, “Time is of essence for us. Her disease is progressive. She loses more cells and neurons day by day.”

    My disagreement with the way this is being portrayed is not that her dad wants to get the treatment for his daughter. I have a problem with the way they are going about doing it. I have spent my entire life fighting to be seen as a productive member of society. I have worked at a career until my health caused me to stop. I have gotten married, and I have socialized with friends and family. I have lived as anyone else would in the United States in spite of an early diagnosis of SMA type II. And with 1 petition, consisting of 3 paragraphs, someone has taken any progress that was made in teaching society that we are regular people with regular dreams, hopes, & desires down to the notion that we are fighting impending death and should be viewed as living on borrowed time.

    What her father conveniently leaves out of his request (it has been casually mentioned in more recent updates) is that Zahra lives in Iran. Because of financial sanctions on Iran, due to their political and humanitarian stances, apparently no bank wants to deal with getting money raised for her injections to her family. Reportedly, banks do not trust Iran and will not transfer money from donations of more than 500,000 per year to a bank in that country. There is also logistical problems with getting her Spinraza because Iran has not approved the drug to be used in that country. It’s just like when our FDA will not approve a particular treatment in the US. Now, Zahra’s father is attacking Biogen for all of this. He has convinced more than 255,300 people to sign the petition requesting Biogen give a discount or compassionate use of Spinraza for his little girl who they “really hope the treatment will make her a normal child,” so they can start to “plan a normal future for her.” These signatures have also come with comments toward Biogen. What appears to be more than 90% of the comments saying that the company is terrible, horrible, doesn’t care about dying kids, only cares about money, should have their leaders shot, should have their own children suffer from this disease.

    I don’t know about y’all, but this type of fundraising and making people aware of SMA really irks me! First, I don’t think Biogen should be blamed for what’s going on here. They have nothing to do with financial sanctions by the US govt or banks on Iran. They also have no control over the fact that the money Zahra’s father raised suddenly lost value because the monetary system in Iran crashed. Secondly, I really dislike it when people act like we are constantly on the edge of death (especially as a young child) when the prognosis for life expectancy for someone with type II can be right in line with the average American. This little girl is more than likely not going to be walking anytime soon, even if she does get the injections, and she will need to be taught that she can live as much of a normal life as she strives for. She needs to be encouraged to look forward to her life instead of looking toward her death.

    As you can see, I’m on my soapbox about this. I feel very strongly when it comes to things like this. I left the MDA as a supporter because I could not stand to watch them put young kids in front of television cameras and get them to talk about pain and dying. I understand this raises money and awareness because it plays on the heartstrings of the people who will donate, but I do not agree with this type of method of doing it, no matter how much money or how many shots it will raise.

    What are your thoughts on it?

    If you would like to read either of the stories, message me & I will give you the links to the Wall Street Journal story, as well as the Change.org petition. I wasn’t sure if I should put them on here are not, so I didn’t.

    adnan-hafizovic replied 5 years, 5 months ago 6 Members · 5 Replies
  • 5 Replies
  • deann-r

    Member
    January 21, 2019 at 12:01 pm

    Thanks for sharing Kelly.  I can see how a parent with a child with SMA would want to do everything in their power to give their child the best possible life.  Unfortunately this is not the way to go about it.  Honestly I don’t know how anyone could raise the money to fund Spinraza out of pocket.  Plus, I agree it skews how SMA is perceived. It bothers me when the woah is me attitude is instilled in kids.

    I recall writing letters to both Biogen to reduce cost and to my insurance urging them to cover it.  It boggles my mind how people think threats towards a company that made a medical breakthrough benefits anyone. It saddens me that it’s not available to everyone everywhere, and I hope they’ll continue fighting for it but in a manner with integrity.  One misconception about Spinraza is that it’s so life changing and you can’t live without it.  That’s untrue.  Yes, it is miraculous, but in all reality it doesn’t wipe out the disease completely.  Sometimes the results are so subtle you don’t even notice.  False hope I think can give people unreasonable expectations.  I try to tell people not to dwell on what they don’t have or can’t do, and that advice extends to Spinraza.

  • kevin-schaefer

    Member
    January 21, 2019 at 12:44 pm

    Kelly, I agree with you and I totally understand your frustrations. This particular issue aside, I hate when people try to pity me and project the message that SMA automatically equals misery and suffering, and that all of us who have it are just dying. Has it caused plenty of suffering? Absolutely. Do we need these life-changing treatments and for pharmaceutical companies to take them seriously? Absolutely. But like you said, it’s amazing how actions like this can send the wrong message and come across as a middle finger to people like you and me, who have worked hard to erase stereotypes about people with disabilities. It’s beyond irritating.

    And yes, I hate that Biogen gets so much unwarranted criticism and hate when campaigns like this go viral. The people there work their tails off everyday to bring Spinraza to as many people as possible. And like DeAnn said, it’s sad that it’s not available everywhere yet, but I understand that this doesn’t happen overnight. If anything, governments are more to blame for this than pharmaceutical companies.

    Thanks for sharing.

  • ryan-berhar-2

    Member
    January 21, 2019 at 8:05 pm

    Honestly, there are so many separate issues here that I’m finding it hard to react.

  • krystal

    Member
    January 22, 2019 at 9:49 am

    Thanks for your post. I think it’s a little outrageous that the comments on the petition came from people who did not appear to understand the difficulties, time, and money it took to make Spinraza approved in the US. However, there are parents that, when thrown into a stressful situation, may take something they first hear and run with it without knowing all of the facts. It is true that SMA is a degenerative disease, but it is not sudden and abrupt with Type II. I have read about many families who are acting like their child with SMA is on the verge of death in order to get signatures for approval or money. I understand that they are probably just concerned for their child, but I agree that there are other ways to go about this.

    As a mother whose infant was recently diagnosed about one month ago, I certainly feel the concerns Zahra’s parents have, and there’s many parents who have a newly diagnosed baby that will hear words such as “Get Spinraza yesterday” and run with it, without taking a step back to learn about the disease, gather more information about alternative treatments, and then deciding the best option for their child. Don’t get me wrong–Spinraza is great, and we are fortunate to have it now, but I agree with DeAnn: Spinraza is not so life-changing that you can’t live without it. There are many people with SMA that have been around without any drug treatment and have lived/are living a fulfilling life.

    I hope the parents know what Spinraza will do for their child, and that it is not a cure. As for me, I am doing everything I can to get my daughter into the AVXS-101 trial, but by no means do I believe it is going to get rid of SMA. There’s just not enough data to confirm this. Prior to ANY treatment, I had to do my research. I needed to better understand the disease my daughter has. I spoke with doctors, nurses, clinical coordinators, Google, library databases, Facebook groups, CureSMA, and more, and I discussed my findings with close friends and family. I think every parent should learn about their child’s disease so they can make informed decisions to better provide and care for them.

  • adnan-hafizovic

    Member
    January 23, 2019 at 6:56 am

    In Denmark, spinraza is forbidden,  it is only allowed to use it for children with type 1, and the reason is its too high price, it is not ethical, that’s their reason. It is really not ethical. In this there are political reasons I will not speak about. you are right to kelly that we have to adapt to the situation.

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