Many hands

Right now, in Australia, the federal government is dragging it’s heels in relation to releasing the drug Erbitux onto the Pharmaceutical Benefits Scheme. The Pharmaceutical Benefits Advisory Committee and the board of Medicare have both signed off and given it the thumbs up and the government has (had) promised to release it to those who need it…. but they haven’t done it by the date they said they would and we’re not getting any answers as to when they intend to honour their promise.

Erbitux is working wonders in my body, I kid you not.

I have been on the drug for 8 weeks now (I had my 8th infusion yesterday) and today received my round 7 results. In just seven weeks my CEA markers have dropped from 4,100 to 234. My CA 19.9 markers have dropped from 113 to 13.9…. remembering that in the CA19.9 arena a “normal” person has a marker count of 37 and below. Each week my markers decrease by 25 to 50 percent. At a time when my markers were inexplicably climbing, Erbitux has sent them packing. Of course, keeping in mind the success of the bowel operation and the SIR spheres treatment but still… it’s producing incredible results. Erbitux needs to be, must be, available as a front line treatment option.

There are approximately 2,000 Australians that need Erbitux. My weekly treatment costs $2,000 to supply. All up, we need $30 million dollars a year to potentially bring this kind of result to many, many Australians at no cost to themselves.

The government has promised it but I need all of you to help remind them of their pledge to the cancer patients of Australia.

When I first started this journey my voice was small, quiet and helpless. Today my voice echo’s loudly around the world thanks to the prayers and support of everyone who visits the blog, countless prayer groups and churches around the world, the local media here in Australia, news outlets around the globe and, of course, Oprah.

Let me feel you, carry you higher
Watch our words spread hope like fire
Secret crowds rise up and gather
Hear your voices sing back louder

We can make a difference. One person plus one person plus one person…. all of us little people. I’m convinced of it.

If you have the time and the inclination please write a (polite) letter to the following people and let them know the people of Australia who are fighting cancer, their families and loved ones, all want and need Erbitux (Cetuximab) released onto the PBS.

Contact details for our Prime Minister, Health Minister and Treasurer are below:

The Hon Julia Gillard MP

Prime Minister

PO Box 6022
House of Representatives
Parliament House
Canberra ACT 2600

Tel: +61 (02) 6277 7700
Fax: +61 (02) 6273 4100

The Hon Nicola Roxon MP

Minister for Health and Ageing

PO Box 6022
House of Representatives
Parliament House
Canberra ACT 2600

Tel: +61 (02) 6277 7220
Fax: +61 (02) 6273 4146

The Hon Wayne Swan MP

Deputy Prime Minister; Treasurer

PO Box 6022
House of Representatives
Parliament House
Canberra ACT 2600

Tel: +61 (02) 6277 7340
Fax: +61 (02) 6273 3420

You can send it by mail but fax will be quicker.

Please, help if you can. The benefits I am receiving from this drug should be available to everyone who needs it. It’s not a miracle cure but it is really smart science and it works.

It works.

(btw… here is a recent news story on the issue. You can really see the rash, even though that day was a ‘good rash day’)

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~ by Kristian Anderson on April 6, 2011.

27 Responses to “Many hands”

  1. Hi Kristian. I will definately type up a fax to send through to the above mentioned dignatories on behalf of all Cancer patients needing this drug. I already know my angle – for me – that expensive drug was Herceptin. I was lucky, it had already come onto the PBS before I was diagnosed, but like you – I would have had to spend thousands every three weeks to have this drug to prolong my life. The nurses have told me so many stories of people mortgaging their houses to have this drug.

    Just a question though – would you be happy for me to a) copy and paste your request on my facebook page with a small intro about you or b) link this page into my facebook for others to come here and get details themselves? Which option is best for you?

    By the way – those numbers are looking great! Looks like this is going to be your year Kristian! How awesome is that! There is a couple of songs I listened to during my treatment that helped alot – thought you might like to listen to them. They are: “Live like you were Dying” by Tim McGraw and “Jesus Take The Wheel” by Carrie Underwood. I do have some others on my playlist – but these are ones that I now think of you when i listen to them – so have been meaning to pass them on to you for weeks now. The Carrie Underwood one especially!

    I hope things continue to improve – let me know if its best to link this website in or just copy/paste to my facebook so I can get the word out. I have many friends affected by Cancer in some way or another, so am sure they would be willing to help.

    Warm wishes xx

    • Thank you. Link it whichever way you feel best…. as long as it gets the information out.

  2. Oh Kristian, I’m so thrilled to see that *any*thing is producing such wonderful results.

    I hope you don’t mnind if I link to this post on my blog later? And my blog’s FB page?

  3. Hi Kristian. My husband is also on erbitux.He has had 4 treatments and like you his CEA was on the rise at 204 and is now 58. He also suffered badly from the rash but his oncologist has given him antibiotics (Doxycycline 50mg) twice a day and his rash has disappeared. Unfortunately he recently contracted shingles over his head and has been very unwell with less energy than at any time during this 18 month journey. I also will be forwarding requests to the addreses you have given us.
    We are celebrating my husbands 51st birthday this Friday and going to Ayres Rock for 2 days on Sunday as it is our first wedding anniversary (although we have been together for 12 years)Hope all keeps going well for you.

    Regards
    Gail.

    • Thanks Gail. I have the Doxy as well… it works a little and I have some other anti-biotics too. Moisturiser is good too but the thing I find that helps the most (for me) is cold water. Takes the edge off for a while. I also find that the rash is subdued while the infusion is underway (like, visibly disappearing) and the day or so after, before ramping back up to full strength right before the next infusion. It’s ok…. it means good stuff is happening, right!?

  4. Hi Kristian – sorry that took so long. Kids to get to sleep and I wanted to do a little research before I posted. All done now.

    http://thethingsidtellyou.blogspot.com/2011/04/lending-my-small-voice.html

    &

    http://www.facebook.com/pages/The-Things-Id-Tell-You/122808587736017

    Hope that’s ok. It’s not a huge blog, but hopefully it’ll get around.

  5. Kristian, you are amazing! These results have made my heart soar, what encouraging, heart warming and uplifting news from you 🙂 Rest assured, we’ll spread the word and send a fax off tomorrow. This is too important not to fight for. So proud of you!!!
    Rob & Mandy Lewis xox

  6. Just sent my letters to all 3 people.

    For those that are wanting to get it snet quickly but don’t have access to a fax machine, you can use http://www.myfax.com/free/. Just put in the number and upload a word or PDF doc and it will send the fax for you for free.

    Good luck Kristian

  7. Does anyone know if letters from the US would be taken into consideration? I would love to help. Blessings and continued good luck to you Kristian.

    • It’s worth a try… just take out the ‘0’ in the fax number so it reads +61 2 xxx xxxx.

      Thank you!

  8. Yayyy!!!!!! What a great day it is to hear this wonderful news!

  9. do you email addresses we can use to write the letters?

  10. Hi Kristian,
    Just saw you on Sunrise this morning. You are so inspirational, especially to those dealing with cancer. I have just finished treatment myself and get you and your feelings. Apart from your campaign you are also helping others who are sick, not feel so alone and isolated by how they feel and the impact this disease has on their lives and their family. I will support your campaign and encourage others to do the same. Thank you so much for raising awareness on this issue. I wish you all the best with your treatment and recovery. If there are other ways to help, please let me know. PS. You are still a very attractive man, even with a rash.
    Debbie

  11. Kristian, you are amazing person and I am going to support you and your campaign all the way. I will try and get as many people as possible to write letters and support your cause, we only need a ripple to turn into a huge wave. All the best to you and your famly.
    Sonja

  12. WooHoo! Positive results! Positive Results! WooHoo!
    Hope the campaign works so that others can have the same drug…….
    The Grandma in America w/non hodgkins lymphoma

  13. Hi Kristian,
    These are the links that should take people all over the world to the contact pages and direct email of the PM and VIP’s you mention above…If they cant get through just google their homepage and hit ‘contact us’and the direct email option comes up.

    The Hon Julia Gillard
    Prime ministers email link
    http://www.pm.gov.au/contact-your-pm

    Link to The Hon Nicola Roxon MP contact details
    http://www.health.gov.au/internet/main/publishing.nsf/Content/health-central.htm

    Link to The Hon Wayne Swan MP
    http://www.aph.gov.au/house/members/member.asp?id=2V5

    I hope this makes it easier to get the messages through about Erbitux and the need for it to placed on the PBS.[that is the subsided pharmacutical benifit scheme that makes it cheaper]

    Keep fighting Kristian!

    Jackie

  14. Dear Kristian,
    I get migraines nearly every day and after 5days of one, today I was at the end of my rope.I thought how I just want an end to the pain and just hang on until after a visit to have my neck/back realigned as tommorow will bring temp relief until the next time.May God put an end to my suffering.
    Then I thought of you…..and I thought of Dorsa….and I thought…..I had a father and sister die [at my age now]…and two brothers killed in two separate RTA accidents 2 years apart ….and a partner who died at 26yrs in a RTA………and my mother who lived in darkness with those losses until she passed recently and I thought how each of us are challenged in many ways.
    Then I thought I bet Kritian would be happy to have a migraine instead of Cancer …I better check in and see how he is doing, he is still fighting it,he is still touching people and there is a lesson in everything.
    The pain is lifting and I appreciate the small things in the world that some people take for granted.
    But here I am in a small country town at my witts end[that where God lives…at witts end]and all I can think of is “how is Kritian doing,what would he do,how lucky I am just to have a migraine,how many people has he touched……..”
    Just to let you know Kritian,I think of you and your family often and you inspire so many..when you have bad days and want to scream,we want to scream for you,and when your numbers are good,we delight in your success………and when you get tried of fighting then cast your burden..and know that God and others will hold you in their thoughts until this challenge is over and you are well again.I feel privilleged that you share your journey with us.I hope it helps you too,knowing we will do everything we can to support you and your family.You are an inspiration!

    • Oh Jackie

      I am so sorry that you are having such horrible Migraines. Let me tell you, as Cancer patients we can definately feel your pain and understand your darkness. Ongoing medical conditions do cause depression – it may be cancer, muscle pain, any number of conditions and illnesses – they all get to us when they are ongoing.

      I just wanted to let you know that I will pray for you tonight before I go to sleep that your darkness as well as your migraines disappear soon.

      I think we all find that when we are having a bad day – there is always someone out there having a worse day. I agree though, Kristian does inspire us to actually get off our butts and do something about it – and I am thankful I found out about him.

      ps. love your comment as to where Jesus lives (Wits End). That is awesome. I bet he does live there too! That is where most of us find him!

      I hope tomorrow brings you relief!!!

      • Hi Cathy,

        Thanks for your prayers!
        My mum lived in darkness but I dont.I just get frustrated that migraines and my other medical conditions stop me from living my best life.
        Finding Kristian and reading the other stories of people fighting their own challenges makes me feel like I am in a team [part of the bigger picture]and not alone.I hope Kristian and ALL the other people touched and inspired by him dont feel alone either.We are all connected to each other as part of humanity and through Love.
        Thankyou for your kind words.
        God lives everywhere we are, and we find him in the heart of friends,in strangers and on the net.
        I heard it said once that “when you’ve been to hell and back,forget the hell and just remember “you came back”.
        I am back!
        Thankyou,
        Jackie

        I hope tomorrow is a new bright day for all of us.

    • Dear Kristian,Rachel and boys,
      My hubble appoligies for making my previous comments sound all about me.
      What I meant to say was, my situation pales into insignificance compared to what you and others have experienced and I draw on all your inspirational stories.
      I wish I had known about the benifits of Erbitux earlier for my own family situation, so thankyou for the education.
      I have emailed the PM in support of this drug being placed on the PBS soon.
      Appologies again..and great to hear Erbitux is working well for you.That is great news.

  15. I just wanted to say that I am so happy that Erbitux is working! I am glad your health is moving in the right direction. What a blessing for you and your family. It’s great when good things happen for good people 🙂

  16. Hi Kristian & Rachel,
    I am from Malaysia
    I saw you in Oprah’s show when she visited Australia, and I read your blog.
    You are such an inspirational person. I do hope God will work a wonderful miracle in your life.
    God Bless.

  17. Hi Kristian, Iam reading and reading all your posts, it’s like you can see into my head! I was diagnosed with bowel cancer in my caecum and in my liver and a couple of spots in my abdominal lympth nodes. I am turning 30 years old in July.

    I was thinking…we are not alone in this battle. Some days this is a gift, I have come back to my faith, I have broken down my life to the most important things. Things I used to be obsessed with no longer stress me. Now I just love my life, my family and friends.

    I am not on Erbitux, I am on FOLFIRI/Avastin. I am lucky that Avastin was put onto the PBS, I count it to be my lifesaver. However, one day I might Erbitux. I am outraged that the government hasn’t made this availible yet on the PBS.

    What I am wondering is getting a band of us together, and paying a visit to Julia Gillard. See needs to see us suvivors in person. We are not just numbers, we are all part of a cancer family.

    My best wishes to you, keep fighting, keep believing. You have been our voice, to we who feel voiceless. I would love to contact you but don’t know how.

  18. Hi Kristian,

    Faxing the letters off tonight…. hoping there is a pile of faxes on the desks of these decision makers every day saying the same thing!!

    It is frightening enough to be diagnosed with cancer, let alone to think that although a drug exists that may be your cure.. you can not afford it. That thought is horrifying. $2,000 a week is not something within reach of ordinary Australians, I hope the media continues to support you in bringing this information to everyone’s attention.

    You are having such fantastic results on Erbitux, I’m praying that among the pile of broken promises this government is accruing, their pledge to release Erbitux onto the PBS is not one of them.

    Congratulations on your amazing results!!

    Blessings
    Cara Wiggins

  19. Hi Kristian…
    Firstly, thank you for coming across my path last year and providing the inspiration for our wedding song… we are both Kiwi’s living in Melbourne & got married on 8th January in New Zealand.
    Secondly, our family has been bitten by the cancer bug twice this year… my father has been dignosed with aggressive prostate cancer & brother-in-law with cancer all through his stomach & bowel (due to surgeons in NZ not operating in time & having a tumor rupture through his body last year). New Zealand has an even smaller tax payer budget so of course the options are few. They are both very active and healthy men.
    I have stumbled across this documentary that may interest you. Not sure if you have seen it but it is free to view for next few days.
    It is VERY interesting about what is going on in the world with cancer treatments… and I am appalled that governments and companies are playing God with peoples lives.
    I have inquired into the possibility of Erbitux being available for my family but have been told its near impossible to get onto trials now.
    I hope you take the time to watch this video in the next day or two (before it is no longer available free) as it has really shed some light on what exactly we are dealing with in the world of cancer treatments.
    Congradulations on your great results.
    God bless…
    Raewyn Pasco

    https://www.burzynskimovie.com/index.php?option=com_content&view=article&id=110

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