A Call for Prayer…

shofar

For those of you who have followed this blog for longer than the previous year (namely since before March 2013), you may have noticed that I started writing a whole lot more seriously in the previous 16+ months.  I’ve always enjoyed writing and whatnot, but I’ve really ramped up the quantity and quality over the last while, mostly because I’ve been off work since June of 2013.  I’ve alluded to my illness from time to time but I haven’t given a whole lot of details because, well, my readers have more than enough things on their own plates.

Many of my readers aren’t from Canada, aren’t really in my social circle, or aren’t people that I personally know, hence I’ve kept my cards close to the chest.  The people in my church and those in my local circle of friends are “in the know,” but they’ve been keeping things on the DL at my request.  But now things have changed, and it’s time to rally everyone who has taken a liking to my writing or work (both here and on the Cripplegate).  So buckle yourselves in, because I am in dire need right now of every prayer warrior I can muster:

– In 1982, I was 5 years old and I had open heart surgery to correct a ventricular septal defect (three holes in my left ventricle).  The surgery was successful and everything was hunky dory, or so I thought.  What I didn’t know at the time was that, back in that era, blood wasn’t filtered or screened for various viral agents (i.e. HIV).  In British Columbia, things like HIV and other pathogens weren’t on the radar that much; blood only started being screened in 1986.  So, as a result of that whole scenario, I had a transfusion of blood tainted with Hepatitis C.  For more info, feel free to do a little reading at the Canadian Liver Foundation.

– In a nutshell, there are 3 types of Hepatitis: A, B, and C.  You get Hep. A from dirty water but you recover from it without medical intervention.  You get Hep. B from unprotected sex (and I’m not sure if it’s treatable) and you get Hep. C from getting tainted blood into your blood (i.e. dirty needles or, in my case, transfusions of tainted blood).  Hep. C is a degenerative infection of the liver that causes cirrhosis (when the liver fibrous tissue becomes scarred) and that means that the liver cannot function as well.  That means that blood doesn’t get in and bile/bilirubin doesn’t get out (which is bad).  Hepatitis C wrecks the liver to the point that it shuts down entirely, meaning that it is ultimately fatal unless otherwise treated.  It’s a very serious disease that kills tens of thousands of people a year in North America…

– …But I’m not dead yet.  I’m currently in the acute stages of manifest Hepatitis, meaning that my liver is not doing well (on a scale of 1 to 6 where 6 is “failing”, I’m at a 5).  I’m really jaundiced (yellow in skin color), absolutely wiped out and have been struggling with severe nausea (i.e. I was throwing up everything I ate, and even randomly dry heaving several times a day).  That’s why I was in hospital this past Monday (I hadn’t stomached any food in 2 days), and I’m now on a powerful anti-nausea drug that has been an absolute gift from the Lord.

– Now this all first surfaced in October of 2012.  In the same week that I discovered that my wife was pregnant with our second (little 13-month old Kajsa, who has just started eating adult food by herself last week…), I was lying in a hospital bed in a hallway for a week and wondering if I’d ever actually see my daughter.  That was a rather difficult period, but it turned out that my Hepatitis wasn’t what was making me jaundiced and ill.  It turned out that, although I had Hep. C for 30 years, I had (by the grace of God) contracted another gastrointestinal infection that kicked my liver pretty hard and resulted in my hepatitis being found; regular gastrointestinal infections hit me exponentially harder than healthy people (i.e. what would be “rumbly tummy” to you with a day of uncomfortably sitting on the pot ends up hospitalizing me).  I ended up getting better around the end of February 2013 (lost my jaundice, was eating fine, had enough energy to go up a flight of stairs without needing to sit down at the top, etc.) and returned to work until June 2013, when I got cleared to begin my first round of treatment.  I was on that regime for several months but it was ineffective.  I was pulled off the drugs to let them cycle out of my system and was gearing up for a different treatment regime that involved a far newer and more powerful drug.  Sofosbuvir is really new (i.e. it got Health Canada approval this year) and its success rates have been really encouraging.

– I was all set to get started on the new treatment regime, and then two weeks ago everything went haywire.  I got jaundiced again, started vomiting, and lost all energy.  This is bad because I don’t know two things:

a.  If my liver is finally failing (that’s not good at all).

b.  If I can go on Sofosbuvir when I’m acute (jaundiced, etc.).

– So I don’t know if I have a secondary infection that’s aggravating my liver a second time (it somewhat looks like it, but I need far more testing for any certainty), and even if I do, I likely need to clear up my symptoms in order to commence treatment (though I’m not 100% certain about that).

– What’s more, is that since I’m getting extended health insurance coverage from my employer’s extended benefits provider, I’ve had to get a special dispensation from my health insurance provider to cover my new treatment regime since it’s absurdly expensive.  I’m looking at either 12 or 24 weeks of treatment at $7,000 per week (so either $84,000 or $168,000, depending on how long my regime ends up being), and on Monday my health insurance provider sent me a letter saying that I was denied coverage for the treatment.  Not exactly good news.

So what do I need?  Four things:

a.  Prayer for quick and accurate diagnosis & ultimately healing.  The Lord could instantaneously heal me, but so far he hasn’t done so (and I understand such things are highly uncommon, regardless of what some people claim).  I need my medical overseers to figure out what is happening to me right now (infection or liver failure) and formulate a strategy.  My next appointment with my liver specialist is Friday, June 20th.  I may be admitted to a hospital at that time, so updates might be slow in coming.

b.  Prayer that my liver is not failing but rather that I have an infection again.  Liver failure means that I need a transplant and my chances of survival are far lower if that’s the case.

c.  Prayer for a successful appeal with my health insurance provider to cover my medication. The drug company and my liver specialist are all working with me on this.  It’s likely going to be a bit of a drawn-out fight, but I’m not going to let them tell me my life isn’t worth $84,000.

d.  Prayer for my wife (Jennifer) and my kids.  This has been a really hard time for them as I’ve been home for a year and a half and running on around 25% battery…which has now dropped to 4%.  I’m constantly wiped and more of a burden than I often realize…not to mention that the interferon regime I was on did some serious jangling of my brain and apparently made me lose my memory as well as become a rather obnoxiously crabby bible-college security guard for around a year (and in other news, if I’ve been somewhat uncharacteristically rude to you in the previous year or so, I’d like to apologize.  I was literally under the influence of mind-altering drugs).

So now you pretty much know everything.

I’m not going to give regular updates on the blog since there aren’t many.  Information comes really slowly and takes a lot of time; most of the last 20 months have been a waiting game with a whole lot of limbo.  I’ll update with any big changes though, and I will covet your prayers…all of them.

People who are praying and don’t hear any news wonder if they should still be praying, or wonder if there’s something new that they need to be praying for, etc.  I’ll do my best to keep you all as up to date as we are, but please understand that often months go by before we have anything to report.

If I take a turn for the better, I’ll make that known.

If I take a turn for the worst, I’ll make that known.

Also, if you don’t already know, my wife has a “secret picture blog for “Nana and Grandma” that’s here.  Feel free to watch for pictures on there of my two little ones doing cute things and remember to pray for them and their mom as Dad has got an ouchie in his tummy (which Tobias kisses better every day now).

Longing for the day,

Lyndon “Mennoknight” Unger

One last thing:  I’ll still publish the occasional blog post as I have time to finish them.  I’m focusing what little energy I have left at my church now, but I’ll double dip from my work with the C&C study that I lead and the men’s leadership group that I occasionally lead.

May the Lord lavishly pour his mercy and grace upon you all.

So teach us to number our days
    that we may get a heart of wisdom.” – Psalm 90:12

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77 thoughts on “A Call for Prayer…

  1. Pingback: Please Pray for L.K. Unger (Mennoknight) | Choosing Hats

  2. I am so thankful for your bravery in sharing such personal news. We have been praying but will continue to do in a more specific way with what you shared.

    Lyndon, my heart aches for you and your family.

    May God hold you all so closely to Him.

      • Amen to that Lyndon. That is the hope for us as believers. I am glad we are in His hands and nothing, not even this sickness and uncertainty, can take you out of Gods grasp.

        This world can bring so much sorrow, but one way or another we can rejoice. You are faithfully serving our risen Lord and are glorifying Him still.

        Prayers continue…

  3. Although I do not know you personally as I live in South East Asia, I have benefited immensely from your writings. I have been praying for you since the fist news I read from your blog. Now I continue praying with the right knowledge and focus. Trusting God will work mightily on your behalf.

  4. Your faithfulness in proclaiming the glory and goodness of the Lord our God in the face of exceedingly difficult providence and mortal adversity is pleasing in His site my brother.

    ……with all boldness, Christ will even now, as always, be exalted in my body, whether by life or by death. 21-For to me, to live is Christ and to die is gain. 22-But if I am to live on in the flesh, this will mean fruitful labor for me; and I do not know which to choose. 23-But I am hard-pressed from both directions, having the desire to depart and be with Christ, for that is very much better; 24-yet to remain on in the flesh is more necessary for your sake. 25-Convinced of this, I know that I will remain and continue with you all for your progress and joy in the faith, 26-so that your proud confidence in me may abound in Christ Jesus through my coming to you again.”

    While standing with you believing for many more years of blessing from your ministry, I must recognize that HE is God and I am not. It is He who has counted the hairs of your head and decreed the days of your life. It is in times like these that we are given the opportunity to glorify Him most.

    May the prayers of the righteous be heard and your recovery be full and yes, even miraculous to exaltation and glory of His great name.

  5. Lyndon, does this sound familiar?
    Several years ago there was an Alabama football player who suffered an injury on national TV. It was brutal beyond description and was caught on camera. Only his skin and a few tendons kept the bottom of his leg from becoming totally separated as it dangled there for the entire world to see. His name was Tyrone Prothro and he was one of the most exciting players in Alabama history.

    Prothro suffered a complete fracture of both major bones (tibia and fibula) of his lower left leg in a 31-3 victory over the Florida Gators on October 1, 2005, ending his junior season. Despite extensive rehabilitation and three separate surgeries, Prothro was unable to resume his football career. On August 3, 2007, he was placed on a medical hardship scholarship and taken off the football roster with both doctors and coach Nick Saban saying there was no way Prothro could play again. And he didn’t.

    Prothro continues to need additional surgical intervention to this day and will never be completely free from care by highly trained and very expensive providers. But with the passage of our new Socialized Medical System came the end of the wonderful care he was receiving and now he might not qualify for any further treatment at all. This travesty is taking place because he is now an unwilling participant in Obama Care.

    So I feel your pain Lyndon! You might ask why Obama Care wouldn’t cover additional surgeries and the same level of care Prothro was enjoying? The answers may be very similar to the reasons you now find yourself in such a pickle.

    Obama Care NEVER allows a patient to freely choose physicians or hospitals except those included as a part of the “network” in which they are placed. And even then the limited number of treatment options is ultimately controlled by the patients “appointed” primary care physician. It gets even worse when, like you, specialists are needed because government bureaucrats have to approve the additional care and its costs. It must meet their definition of “medical necessity” before payment will be approved.

    (Don’t break your hip granny! You ain’t gonna live long enough to justify the expense of a hip replacement and you thereby fail to meet the governments definition of “medical necessity”. And granny, don’t worry about hospital staff doing their best to preserve the sanctity of your life. Our right to life, liberty and the pursuit of happiness now has an expiration date. It expires whenever the government decides that our rights either become too inconvenient or too expensive. And you thought that “death panels” were a myth, right? Health care is no longer an issue of or graded in terms of quality. It’s now dispensed based on cost and the government’s perceived return in “value”.)

    Next to Prothro being forced into the VA system of care, Obama Care is the worst “system” imaginable for gaining access to quality tertiary care. Simply stated, Prothro would be denied (along with any of us) the best care possible unless he was somehow assigned to a “network” that included all of his existing resources. Winning the lottery has better odds.

    BTW, if you want to peer into the future to see what Obama care will finally look like, just study today’s train wreck of Mal Practice and mis-care provided by the total governmentally run VA.

    Obama Care is our first step leading to the ultimate liberal destination of a “single payer system”. Those who authored Obama Care built in the certainty and inevitability of its failure. The administration knew that passing a “single payer” bill was not possible. But the unavoidable looming failure of Obama Care would have the predictable consequence of ushering in a “single payer” system with little or no opposition. This would preserve the existing “socialistic” model of Obama Care and ultimately give birth to a “single payer” system. That will ultimately evolve into a carbon copy of today’s VA.

    Unfortunately we don’t have congressional “conservatives” with enough guts on moral integrity to put a halt this lunacy! Or for that matter to stop our Constitution from being torn to shreds in ways that even surpass our once most dreaded nightmares! Instead, we have become the frog in the pot, lulled into a sense of complacency as the water begins to boil!

    But I digress, or do I?

    Remember, “Nothing is more dangerous than friendly captivity!”

    Lyndon, you and your family are in my prayers as you fight for the God given right to live your life and with only God deciding for how long. Not some “death forum” making decisions based on their view of your future societal contributions vs. the costs involved.

    Godless ISMS are not what He intended for us! They are prisons of misery!

  6. Lyndon, I have your name on my post-it note prayer list on my computer desk so I will remember to pray for you and your family. May God bless you and raise you up.

  7. I will be praying for you Lyndon. May God’s grace be profoundly real to you and all of your family during this time.

  8. I appreciate having the opportunity of joining with you and your family to pray for God’s daily grace in the process. Believing that God will bring you future strength
    Darrell

  9. Brother, I join with everyone else in praying for you,your dear family and your church. Our Lord is so gracious in these times to sustain us in ways unknown to us outside of these trials. May the Lord be glorified in you through everything.

  10. Brother,

    I can’t imagine what you’re going through. I pray for your healing and that The Lord keep you strong through all of this. I especially pray for your wife and children. My heart goes out to them.

    My prayers are with you brother. Thank you for sharing this. May our Lord Jesus Christ be glorified in this situation.

  11. I’m praying for you Brother. I’m in the US and just this morning a guy in the coffee shop started taking I guess the same drug for the same reason. It cost a little over $1,000 a pill. May The Lord comfort you and your family.

    • Thanks so much Levi! The drugs are obscenely expensive, but from what I understand it’s because the pharmaceutical company that created it only has a limited time of exclusive production and distribution rights from which to recoup the $50+ million in research & development costs. That seems somewhat understandable, but I don’t have time to wait for generic brands to come out. Such is how the Lord has brought things to pass.

      I will most certainly covet your prayers.

  12. I will be praying for you and your family brother. SLIMJIM informed me about your condition. May the Lord bring you and your family ever closer to Him during this difficult time. I will pray specifically also concerning the health insurance situation. I had a dear friend who had level 4 cancer and the insurance company did not want to pay for some of the expensive treatment he got. As a result, he wrote a letter to higher up mgmt and they were able to pay for it afterwards. I hope you will have a similar outcome, brother.

    • For what i am about to say,EvangelZ, please don’t be cross with me, and Mennonight, I don’t mean to be flippant in your difficult situation.

      EvangelZ, there’s nothing amiss in your advice to write a letter to higher up mgmt to pay PLUS to pray to Higher Up MGMT.

    • Thanks EvangelZ. I will be certainly talking with all my allies and doing everything possible to contest the decision made against me. Proverbs 21:1. I will covet your prayers on this for sure.

  13. It is an honor to intercede for you, your family, your local church family, your doctors, insurance folks…you get the picture. God is on the throne. Permanently. Fear not. I find comfort in Rom 11:36: For from him and through him and to him are all things. To him be glory forever. Amen. God will use this trial for his glory. We appreciate your writings…I always love to see you “in my inbox” so to speak.

  14. Greetings Brother,
    I’ve only recently begun to read your blog and have found fascinating. I am an American, but live in Chile.
    I am astonished at your sickness, because your writing doesn’t reflect such a sick man, nor even someone who has memory problems.
    Nevertheless, I shall certainly pray for you.
    I am almost 70, but God in His infinite grace allows me to appear 40 and walk and talk like a man of 40, that I say not as a boast. But how wondrous our God is, His mercies to perform. Here am I supposedly an elderly man still enjoying youth.
    Friend, although, I know little about you, I know, except your writing, they have certainly informed me and helped me. I pray God’s mercy over you and His touch of healing reconstruct your liver and health. May His loving kindness flow upon you as He has me. His blessing of good health, after 70 years, I pray for all my siblings in Christ and now especially you.

    Patrick

    • Thanks for your kind words Patrick. I have two secrets:

      1. It takes me far longer than you’d guess to write things.
      2. My wife is a highly gifted editor who cleans up my rambling nonsense.

      I’m glad to have blessed you in as much as you’ve read my offerings, but that blessing dwindles in comparison to the blessings of your prayer on my behalf. May the Lord bless you greatly.

  15. Thanks for sharing these details. I have been praying for you and your family for a while now, and will continue to do so.

  16. Lyndon, I am Jennifer’s cousin from Colorado, my husband and i are praying for healing, strength and peace for you. We are praying for strength and patience for Jennifer, and strength and wisdom for your doctors and care givers.

    Isaiah 41:10: “Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand”

  17. Lyndon,

    The interferon did not make you more meaner or rude, if anything it made you a better writer 🙂 (Just kidding). This is a tough ordeal you are in brother and not only you but also your loved ones. You have suffered much and suffer still and this is really why you have so much wisdom and discernment to share (not interferon 🙂 ). There is certain economy of suffering in the kingdom of God and I know I do not have to say much about that to you or others, Unfortunately, due to our fallen nature (even after regeneration) we do not learn as much on the bed of ease (or relative ease) as we do learn on the bed of suffering. I hope I am not appearing callouss for the reader for I know I am not for you. Just saying that your suffering produced much fruit already. Look at all these people testifying to that here and I am one of them too. I went through much suffering these last few years brother and had satan and his hordes working on me overtime and I have to say that your writings were of much blessing and one of the beacons of hope for me in the tunnel I walked through. Although, it was really hard for me and my none of that was even close to your ordeal… None. Know this Lyndon. The Lord of Glory loves you much and yours and He will never leave you nor forsake you now and forevermore. He has you in His grip no matter where He will go with you. Prayed on my knees already just now and will pray for you and yours. Will pray.

    scum of the world,
    Despeville

  18. Tears, longings, joys, and prayers for you and for your family, Lyndon. May God graciously and miraculously act for your healing and comfort.

    ““Eighty and six years have I served Him, and He never did me any injury: how then can I blaspheme my King and my Savior?”” -Polycarp

  19. Lyndon,

    We are praying for you & your family. It is a blessing to see your faith. Your faith doesn’t seem to be your own but, that of God’s. Much like how Abraham not being a righteous man but, an idolitrous one was imputed with righteousness from God. And what flowed from that was a life marked by faith. As a spiritual child of Abraham you have the same faith.

    I know this is true of you because you are accepting of God’s sovereign will in your life. I hope to encourage you to continuing on in that faith. It is a faith that comes with a guarantee of healing whether that results in many more precious years with your family or slipping into your glorified body and a crown filled with jewels. And even though you may go through moments of wondering if God even exists, it’s a faith, that will always bring you back to humbling yourself before God and saying “Not mine, but Your will be done.” The faith you are displaying is now a permanent legacy in your family tree. Generations from now your off-spring will be able to look back to the unadultrated faith of their Great, Great, Great Grandfather Lyndon.

    This is not an easy faith to hold onto since, we live in a time when much of the Christian church has turned faith into a ritual of works. A faith that requires you to be able to muster up enough of it. Sadly, too many churches are promoting this faith that turns a gift from God into something that they think can be used to push around God. This man-centred faith makes the blessing of healing out to be a right.

    I long for the Christian church to plant itself on the correct side of the fine line between these two different concepts of what it means to have faith. I thank God for the testimony your life is providing. And I can only hope that if I ever need it, I too would have the kind of faith that would know without a doubt that God could heal me in an instant yet be able to rest in knowing God will do what ever brings Him the most Glory. God already has a plan and he blesses us with the privilege of participating in it through prayer and so we will continue to do just that, for you Brother.

    Tammy Miller

  20. Lyndon & Jennifer,

    I will be praying, my brother has been trough a similar illness, in Holland, where everything is paid for and he has made a decent recovery, Be encouraged, may your faith, your love for The Lord and for each other be strengthened through this trial. Thank you for sharing, that we may truly be the body of Christ in action.

    A fellow Canadian, Theresia

    P.S if the insurance does’nt work out, where can I send my contribution?

  21. Praying for you – God’s strength during your weakness. His comfort as you wait. His closeness with greater hope than ever before.
    Praying for your precious family – trust and joy as they wait with you. For your wife, the “what ifs” to not bombard her mind, but that she would stand firm in trusting the Lord for his perfect purpose through this illness.
    Healing.
    Provision.
    Wisdom.

  22. I second the thoughts of Theresia. Have you thought of setting up a bank account into which you may receive donations of help. I am sure there are MANY who have benefited greatly from your words over the years who would eagerly step up and donate towards your expenses. A brother in need should not have be burdened unnecessarily when the Body of Christ should be standing ready to help.

    Prayers, of course, will continually rise to the One True Source of all Blessings. May God richly bless you and your family with a real sense of His Presence surrounding you with His Love and Strength. God Bless you as you fight the good fight.

  23. Dear Lyndon,
    I can’t imagine how difficult this trial must be for you and Jenn. I thank God that He has given you such a godly and great helper. I’m sure you know that this adversity is good for the gold. My hope is that this our Lord will be using you in even greater ways. We need you Lyndon, the body of Christ needs you and your tireless work. At least from our perspective. And I know you do get tired. Thank you for your time stewardship we are benefiting greatly and are truly blessed by your offerings. Nothing is too big for God and we’ll be praying for you dear brother.
    25 “As for me, I know that my Redeemer lives,
    And at the last He will take His stand on the earth.
    26 “Even after my skin is destroyed,
    Yet from my flesh I shall see God;
    27 Whom I myself shall behold,
    And whom my eyes will see and not another.
    My heart faints within me!

  24. I’m from Nigeria (west Africa) and I’ve been praying for you since your last post.
    I and my church members will wrestle in prayers together with you.
    May God have mercy on you and restore unto you good health, that I and so many others can keep benefiting from you. Amen!

  25. Lyndon,
    We are sorry to hear the news that you shared. Our Sovereign power, the King of the Universe is a gracious and merciful Elohim and we rejoice knowing that He that created us also knows what is best for us even when our own shortsighted vision fails us.

    We came across your website while researching kinesiology and very much appreciated your walk through the Scriptures on the subject!

    We will absolutely be in prayer for you and your family that our Father, Yah, will heal you.

    I must mention that where pharmaceuticals fail, our Creator has a bountiful garden of remedies.

    Have you researched the herb Phyllanthus niruri- -the more common name being Chanca piedra? Reading about it and having personally used it for other ailments, it shows promise (through the research I’ve done) for those suffering with Hepatitis. It’s astounding how wonderful Yah is to create such wonderful herbs without all of the terrible side effects of what’s in today’s drugstores.

    May Yah be with you and give you strength.

    • Victoria, thanks for your prayers.

      What research have you done on this stuff?
      What lab are you with?
      Where have you published your findings and can you send them to me?
      How effective is in when compared to existing double and triple therapies?
      How does it stack up against the current success rates of sofosbuvir?

      • Lyndon,
        I am only a lay[wo]man 😊and I have no medical training of any sort. I am a wife, mother and researcher. I came across the findings regarding this herb only after spending many hours researching for another condition. There are studies (you can find and read online) that show many with hopeless cases of hepatitis that were able to return to their doctors who could no longer find a trace of the illness. This was noteworthy to me and I thought about this when you sent out the call to prayer. I figured that there is nothing to lose. I do have some research that I have saved that I’d be happy to share with you via email if you would like.
        The herb is very accessible and not expensive.
        We praise the Father for His provision!

        • Victoria, thanks for your good intentions. Believe it or not, I’ve known that I’m dying for over a year and a half and I’m a graduate-level-trained researcher who has done a rather large amount of reading. Many of the recommends I get from well intentioned people are simply idiotic, but yours is not…so thank you.

          As best I’ve determined, much of the research has been done on Hepatitis B and not C, and they’re actually utterly different viral strains altogether. The research done into viral load reduction of HCV has demonstrated a lack of consistency, which is partly why Phyllanthus niruri is still being researched.

          I have a top notch team of medical experts looking out for me including a few of the brightest minds our country has available, and I’m definitely siding with them and not taking chances by self-medicating with something that may interfere with the very hopeful treatment I hope to receive.

          I don’t distrust modern medicine or pharmaceutical companies because I serve the living God who is the ideological foundation of both and sovereignly runs them both according to his good pleasure. I’ll update in time as more facts become available, but quite honestly the many thousands of prayers I’ve received have been far more effective than I was ever expecting.

          I’ll continue to covet your prayers as well.

  26. http://www.nydailynews.com/life-style/health/new-drug-combo-cure-hep-weeks-article-1.1838091
    I can’t imagine you and your doctors have left any stone unturned but I found this and thought if you hadn’t heard of it, it might be of interest.
    *****************************************************************************************
    New drug combo could cure hepatitis C in four weeks
    An experimental Bristol-Myers Squibb drug is being tested with Sovaldi, an expensive but popular medication. Shorter treatments could mean lower costs.
    REUTERS
    Published: Friday, June 20, 2014, 5:13 PM
    Updated: Friday, June 20, 2014, 5:13 PM

    Read more: http://www.nydailynews.com/life-style/health/new-drug-combo-cure-hep-weeks-article-1.1838091#ixzz35V6VRFCT

    Sovaldi can cost close to $90,000.

    In the race to find a faster cure for hepatitis C, Bristol-Myers Squibb Co. said it will test its experimental antiviral drug combination with Gilead Sciences Inc.’s blockbuster drug Sovaldi, hoping to cut treatment time to four weeks.

    Bristol-Myers disclosed plans for the exploratory 30-patient trial testing its three-drug combination with Sovaldi in an interview with Reuters. Eric Hughes, the leader of Bristol’s global hepatitis program, said the details were due to be posted on the clinicaltrials.gov website next week.

    Sovaldi’s $84,000 price tag for a 12-week treatment has spurred outrage among insurers, state health officials and lawmakers who fear the cost of treating millions of Americans with the progressive liver disease will top $250 billion. Insurers are pushing Gilead’s rivals to offer lower prices when their hepatitis C medicines reach the market.

    Using the drug for a shorter course of treatment could, in theory, lower the cost, even when combined with Bristol’s therapies. Rivals Merck & Co and AbbVie are also racing to develop next-generation hepatitis C treatments that cure most people of the virus in a shorter time frame.

    But drug pricing experts expect Gilead and its rivals may still argue that the quicker cure represents a value to patients, buffering any steep price reductions.

    “The position and concept of pharma is not ingredient costs or duration of treatment cost. Pharma is looking at it as cost per cure,” said John Whang, co-president of Reimbursement Intelligence, which works with pharmaceutical companies and payers to help determine prices for medicines.

    The cost could come down, he said, “but it’s not going to be proportionate to the degree that the duration of treatment shortens.”

    The new generation of oral drugs being developed by several companies has raised hepatitis C cure rates to well above 90 percent from about 75 percent without the need for interferon or ribavirin, which caused miserable side effects that led many patients to delay or drop treatment. The drugs in clinical trials have already cut treatment time to 12 weeks from 24 to 48 weeks.

    “We got rid of the tolerability problem. We got rid of the efficacy problem. Now there is a tremendous drive to get down to shorter treatment durations,” Bristol-Myers’ Hughes said in a telephone interview.

    REVIVING A SOVALDI COMBO

    Bristol’s plan essentially revives an effort to test its drugs in combination with Sovaldi. It previously tested a single compound with Sovaldi, achieving cure rates close to 100 percent in 12 weeks. But Gilead scrapped further testing in 2012, as it preferred to develop its own combination without a partner.

    Gilead’s pill that combines Sovaldi with its ledipasvir is expected to gain U.S. approval this year for therapies of eight or 12 weeks, depending on the patient. The company is also testing the combination as a six-week treatment.

    The go-it-alone strategy has already paid off as Gilead was first to market with Sovaldi, breaking pharmaceutical industry sales records with $2.3 billion in sales within a few months.

    The new study, set to begin in late July, will test a trio of Bristol drugs with Sovaldi in previously untreated patients with the most common Genotype 1 form of the virus. It will involve two groups of 15 patients each – one getting four weeks of treatment and the other six.

    If Bristol can demonstrate cure rates in excess of 90 percent in four weeks, it plans to conduct larger trials with a more diverse patient population.

    “We’ll see what the data says,” Hughes said. “Taking this forward will be a very exciting thing.”

    With Gilead not involved in the effort, Bristol will pay full price for Sovaldi to conduct the trial.

    Bristol would not discuss potential pricing of its regimen, since its drugs are not approved. But if treatment can be cut to four weeks from 12, the Sovaldi portion would be closer to $28,000.

    Other rivals are also advancing efforts to compete in what is expected to be a huge market.

    Merck this month agreed to pay $3.85 billion to acquire Idenix Pharmaceuticals Inc with the hope that combining the two companies’ most promising drugs will produce cures in four to six weeks across the full spectrum of genotypes.

    U.S. and European health regulators in the last week said they would accelerate their reviews of AbbVie’s four-drug regimen, meaning it could be vying for market share by early next year.

    Read more: http://www.nydailynews.com/life-style/health/new-drug-combo-cure-hep-weeks-article-1.1838091#ixzz35V6uW1wk

    • Thanks for the info Craig. The problem for me here is that right now, Sovaldi is approved by health Canada but the Bristol Meyers component isn’t and is still in clinical trials, hence is not really an option for me. That means that I may have a wait of a year or more for the combo, and right now time is of the essence for me.

      I appreciate the serious suggestion though, and it’s a good one that I’m simply unable to utilize. Thanks for not recommending that I give up Gluten.

      • I do know and am sure you do as well that “compassionate use” policies exist with all of the major drug companies. These programs are influenced to a large degree by public image considerations and whether or not the FDA has approved a “fast track status” for the drug in question. Sometimes nationality and the country in which you reside can be raised as an issue but I’m not aware of that alone being a insurmountable block aid to treatment. A move could be required at least during the period of treatment.
        Bristol-Myers Squibb – Compassionate Use Policies
        http://www.bms.com/searchresults/Pages/home.aspx?k=compassionate%20use&s=BMS.com-US
        Results 1-10 of 10.
        Results by Relevance | RSS
        Product Stewardship
        Bristol-Myers Squibb is a global biopharmaceutical company whose mission is to discover, develop and deliver innovative medicines that help patients prevail over serious diseases.
        http://www.bms.com/sustainability/environmental_performance/Pages/product_stewardship.aspx
        EAP-Request-Form.docx
        Named Patient Program and Emergency Use) for Bristol-Myers Squibb Medicines. … Named Patient / Compassionate Use?
        http://www.bms.com/clinical_trials/investigator_sponsored_research/Documents/EAP-Request-Form.docx
        Expanded Access to Investigational Medicines
        … referred to as “compassionate use” … for expanded or compassionate use from these patients and we take great care to have each individua … trial or under compassionate use – please discuss your situation with your treating physician.
        http://www.bms.com/research/Pages/Expanded-Access.aspx
        Expanded Access Program Investigator Requests
        Expanded Access Program (Compassionate Use) Investigator Requests Submitting a Request Form
        http://www.bms.com/clinical_trials/investigator_sponsored_research/Pages/expanded-access-program.aspx
        Information on Nivolumab Expanded Access Program for Advanced-Stage Melanoma Patients
        The terms “Compassionate Use,” “Expanded Access,” “Access Protocol” and “Treatment Use Protocol” are … Squibb have a compassionate use or expanded access program for nivolumab in advanced melanoma? … approved for use outside of a clinical trial or this EAP by any regulatory agency.
        http://www.bms.com/research/Pages/Expanded-Access-FAQ.aspx
        Partnering with Patients and Physicians
        A similar approach is being studied for use in Brazil with rheumatoid arthritis patients. … single patient use (compassionate use) programs for oncology medicines, along with physician suppor …
        http://www.bms.com/responsibility/access-to-medicines/Pages/partnering-patients-physicians.aspx
        Access Management
        … Access and Compassionate Use programs and studies that are terminated early); be clinically benefit …
        http://www.bms.com/responsibility/access-to-medicines/Pages/access-management.aspx
        greenh.pdf
        … innovative and compassionate patient care that meets high standards of quality in a cost-effective …
        http://www.bms.com/Documents/sustainability/downloads/greenh.pdf
        EFPIA – Publication of Data on Patient Advocacy Group Support
        Type of Interaction Description of Interaction VIROLOGY Aids Hilfe Wien Sponsorship of PAG activity Financial support in consideration of Bristol-Myers Squibb-information desk and logo visibility 1,500 …
        http://www.bms.com/Documents/ourcompany/efpia.pdf
        MSustainability.rev
        the lives we touch: progress toward sustainability Bristol-Myers Squibb 2003 Sustainability Report Social Progress, Environmental Stewardship, Economic Growth & Development H contents1 • Letter from the …
        http://www.bms.com/Documents/sustainability/downloads/sust03.pdf
        *********************************************************************************
        I also wonder where they are in this trial and if it’s closed!
        “In the race to find a faster cure for hepatitis C, Bristol-Myers Squibb Co. said it will test its experimental antiviral drug combination with Gilead Sciences Inc.’s blockbuster drug Sovaldi, hoping to cut treatment time to four weeks.
        Bristol-Myers disclosed plans for the exploratory 30-patient trial testing its three-drug combination with Sovaldi in an interview with Reuters. Eric Hughes, the leader of Bristol’s global hepatitis program, said the details were due to be posted on the clinicaltrials.gov website next week.”
        AND
        REVIVING A SOVALDI COMBO
        http://hepatitiscnewdrugs.blogspot.com/search/label/%28Sofosbuvir%29%20now%20Sovaldi
        Bristol’s plan essentially revives an effort to test its drugs in combination with Sovaldi. It previously tested a single compound with Sovaldi, achieving cure rates close to 100 percent in 12 weeks. But Gilead scrapped further testing in 2012, as it preferred to develop its own combination without a partner.
        Gilead’s pill that combines Sovaldi with its ledipasvir is expected to gain U.S. approval this year for therapies of eight or 12 weeks, depending on the patient. The company is also testing the combination as a six-week treatment.
        The go-it-alone strategy has already paid off as Gilead was first to market with Sovaldi, breaking pharmaceutical industry sales records with $2.3 billion in sales within a few months.
        The new study, set to begin in late July, will test a trio of Bristol drugs with Sovaldi in previously untreated patients with the most common Genotype 1 form of the virus. It will involve two groups of 15 patients each – one getting four weeks of treatment and the other six.
        If Bristol can demonstrate cure rates in excess of 90 percent in four weeks, it plans to conduct larger trials with a more diverse patient population.
        “We’ll see what the data says,” Hughes said. “Taking this forward will be a very exciting thing.”
        With Gilead not involved in the effort, Bristol will pay full price for Sovaldi to conduct the trial.
        Bristol would not discuss potential pricing of its regimen, since its drugs are not approved. But if treatment can be cut to four weeks from 12, the Sovaldi portion would be closer to $28,000.
        Other rivals are also advancing efforts to compete in what is expected to be a huge market.
        Merck this month agreed to pay $3.85 billion to acquire Idenix Pharmaceuticals Inc with the hope that combining the two companies’ most promising drugs will produce cures in four to six weeks across the full spectrum of genotypes.
        U.S. and European health regulators in the last week said they would accelerate their reviews of AbbVie’s four-drug regimen, meaning it could be vying for market share by early next year.
        (Reporting by Bill Berkrot; Editing by Michele Gershberg and Douglas Royalty)
        *************************************************************************************
        There are also some other very interesting web sites:
        European Medicines Agency advises on compassionate use of daclatasvir
        http://www.ema.europa.eu/ema/index.jsp?curl=pages%2Fnews_and_events%2Fnews%2F2013%2F11%2Fnews_detail_001971.jsp&mid=WC0b01ac058004d5c1
        Clinical Trials.gov
        https://clinicaltrials.gov/
        Calls to your elected officials can also work to your favor. Compassionate treatment for a constituent is worth its weight in gold to a politician and Big Pharma is more than slightly accommodating when it comes to “pleasing” someone who can politically influence their financial well-being!
        I may be imparting information you and your doctors have already examined with fine tooth combs. If so, I apologize for taking your time when it could otherwise be spent more profitably. However, it is my prayer that something I have said or a link I’ve provided has either shed additional light on a something previously considered or been new and useful.
        God Bless You (and He has and He will)

  27. Hey Lyndon, long time no see. Thanks for sharing and I pray that you become more like Jesus and that your family does as well.

  28. Pingback: Quick prayer update | Watch Your Life and Doctrine Closely…

  29. Pingback: Authentic Fire Review: Chapter 9 | the Cripplegate

  30. Dear brother in Christ,

    I have been having ongoing health problems for the last three years and my heart is with you. I want to share a verse that really encouraged me on one of the very hard days. 2 Cor 4-16-18:
    16 So we do not lose heart. Though our outer self is wasting away, our inner self his being renewed day by day. 17 For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, 18 as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.

    We (me and my wife Jennifer) will be praying for you.

    God bless you!
    Regis

  31. I started reading your blog only recently. I have enjoyed your intelligence and great humor. Hang in there. I am praying for you and your family. In His love, Chris from NC (USA)

  32. Pingback: Psalm 23 | Life on Van Island

  33. Pingback: Quick Prayer Update… | Watch Your Life and Doctrine Closely…

  34. Pingback: A Second Call for Prayer | Watch Your Life and Doctrine Closely…

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