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Daniels HSCT Treatment for Multiple Sclerosis

Organized by: April Soerens

April's Photo
 

Update.
October 30, 2016

My husband is a Medically Retired Combat Veteran. He's served as an MP for 13 years, for the 10th Mountain Division in Fort Drum, NY. He has See More

THE STORY:

 

Lets start with the basic knowledge, on what Multiple Sclerosis is.......

Multiple Sclerosis is a chronic, typically progressive disease involving damage to the sheaths of nerve cells in the brain and spinal cord, whose symptoms may include numbness, impairment of speech and of muscular coordination, blurred vision, and severe fatigue.

Multiple Sclerosis is considered to be an immune-medicated disease in which the body's immune system attacks the central nervous system (CNS). Most MS experts believe it to be an autoimmune disease, although this continues to be the subject of debate in the scientific community. Autoimmunity---the prefix “auto” means “self”--- means that the immune system is reacting against normally-occuring antigens (proteins that stimulate an immune response) in the body, as if these antigens were foreign. However, no specific antigen has yet been identified in MS, leading some MS experts to conclude that MS cannot be classified as an autoimmune disease at this time.

In the case of MS, the immune system attacks and damages certain structures and cells with in the Central Nervous System (CNS) including:

Myelin (fatty sheath that surrounds and protects nerve fibers),

oligodendrocytes (myelin producing cells) and,

underlying nerve fibers.

T cells, which are one type of white blood cell in the immune system, somehow becomes sensitized to proteins in the CNS. When T cells become activated, they enter the CNS through blood vessels and produce damaging inflammation. Once in the CNS, these T cells not only injure myelin, but also secrete chemicals that damage nerve fibers (axons) and recruit more damaging immune cells to the site of inflammation. It is not known what causes T cells in persons with MS to become activated but it is postulated that both genetic and environmental factors are important.

 

Now we will delve into the way that Multiple Sclerosis is treated.

 

If you have active Relapsing Remitting MS(RRMS), your doctor will first treat you with one of the disease-modifying drugs. They're called disease-modifying drugs because they can ONLY slow down progression of MS and prevent relapses. These drugs work by suppressing the immune system so that it doesn’t attack the protective coating(myelin) surrounding the nerves.

 

Disease-modifying drugs that reduce the number of exacerbations include:

interferon beta 1b (Betaseron, Extavia)

glatiramer acetate (Copaxone)

Disease-modifying drugs that have been shown to reduce exacerbations and slow the progression of MS include:

interferon beta 1a (Avonex, Rebif)

peginterferon beta 1a (Plegridy)

teriflunomide (Aubagio)

fingolimod (Gilenya)

miloxantrone (Novantrone)

dimethyl fumarate (Tecfidera)

natalizumab (Tysabri)

 

Most of the side effects that do occur stem from the injection itself, including redness, warmth, itching, or dimpling of the skin over the injection site. With the interferon drugs, it is common to have flu-like symptoms—aches, fatigue, fever, and chills. The interferon drugs can also slightly increase your risk for real infections by lowering the number of white blood cells that help your immune system fight off illnesses.

 

There are three oral drugs available to treat the relapsing form of MS.

Aubagio is a once-a-day tablet. Side effects of Aubagio include diarrhea, abnormal liver tests, nausea, and hair loss. Aubagio does carry a “black box” warning – the FDA's most serious warning – because of liver problems and birth defects.

Gilenya is another once-a-day tablet for Relapsing MS. Before you can take this drug, you'll need to have a vaccine for chickenpox if you haven't already had chickenpox. Because during a clinical study one person died from chickenpox while taking Gilenya. Side effects include headaches, diarrhea, back pain, cough, and abnormal liver tests. Because Gilenya may cause a slow heart rate, your doctor will watch you closely after your first dose. Progressive Multifocal Leukoencephalopathy (PML) has recently been reported with this drug.

(Progressive multifocal leukoencephalopathy is a rare and usually fatal viral disease characterized by progressive damage or inflammation of the white matter of the brain at multiple locations. It is caused by the JC virus, which is normally present and kept under control by the immune system. JC virus is harmless except in cases of weakened immune systems. In general, PML has a mortality rate of 30–50 percent in the first few months and those who survive can be left with varying degrees of neurological disabilities.)(The JC virus or John Cunningham virus is a type of human polyomavirus and is genetically similar to BK virus and SV40. It was identified by electron microscopy in 1965 by ZuRhein and Chou, and by Silverman and Rubinstein, and later isolated in culture and named using the two initials of a patient, John Cunningham, with progressive multifocal leukoencephalopathy. The virus causes PML and other diseases only in cases of immunodeficiency, as in AIDS or during treatment with drugs intended to induce a state of immunosuppression.)

Tecfidera is a twice-a-day tablet for Relapsing MS. It may cause low levels of immune cells, so your doctor will do regular blood tests. An active ingredient similar to the one in Tecfidera has been linked to four cases of a serious brain infection called PML. The drug's most common side effect is flushing with extreme heat and itchiness, stomach pain, diarrhea, nausea and vomiting.

If these drugs do not work for you, the next step might be to try a different disease-modifying medication called natalizumab (Tysabri).

Tysabri prevents immune cells from getting to your brain and spinal cord, where they can damage nerves. This drug is ONLY used if other medications fail, because if has been linked to PML. If you don take this drug, you will be monitored very carefully. According to the FDA, PML incidence per 1,000 patients is 0.3 cases during the first two months of treatment, 1.5 cases during 25 to 36 months of treatment, and 0.9 cases during 37 to 48 months of treatment. A blood test can help doctors assess risk for PML. The test looks for evidence of exposure to the JC Virus which causes PML.

The most severe case of MS that arent responding to medication, doctors may prescribe mitoxantrone (Novantrone) or alemtuzumab (Lemtrada). Both are chemotherapy drugs designed to treat cancer. They are used to treat certain types of MS by suppressing the immune system to prevent it from attacking nerve coverings. Novantrone is used sparingly, though, because it carries a FDA “black box” warning of risks of heart damage and a type of leukemia.


 

Multiple Sclerosis medications are designed to prevent flare ups, but you can still get exacerbations that sometimes can seriously interfere with your ability to get around.

Mild exacerbations will eventually go away on their own, so if theyre not bothering you, you dont need to treat them. On the other hand, if a flare-up is getting in the way of your life, your doctor may give you high-dose steroids through a vein (intravenously) or by mouth to bring the flare-up to a speedier end. Steroids wont slow down the course of your overall disease, though.


 


 

Daniel has been on Betaseron, Gilenya, Tecfidera and Ampyra(walking med). And then continued to show progression in his Multiple Sclerosis. His next option was either Lemtrada or Tysabri. But the risks of infections out weighed the pros, for these medications. But there is hope.

In my quest to find an alternative treatment that not only suppresses Daniels MS, but also helps put it into remission and reverse disabilities, I ran across a Clinical Trial in its third phase with the FDA. This Clinical Trial consisted of an Autologous Hematopietic Stem Cell Transplant (aHSCT).

Stem cell therapy is any treatment that uses or targets stem cells, which are the types of cells that differentiate into many different specialized cells in our bodies. Stem cells are found in both embryos and adults.

HSCT (Hematopoietic Stem Cell Transplantation) attempts to “reboot” the immune system, which is responsible for damaging the brain and spinal cord in MS. In HSCT for MS, hematopoietic (blood cell-producing) stem cells, which are derived from a person's own (“autologous”) bone marrow or blood, are collected and stored, and the rest of the individual's immune cells are depleted by chemotherapy. Then the stored hematopoietic stem cells are reintroduced to the body. The new stem cells migrate to the bone marrow and over time produce new white blood cells. Eventually they repopulate the body with immune cells.

JULY 2016


 

I sent in Daniels application for the Clinical Trial, at Northwestern Medicine in Chicago Ill., with Dr. Richard Burt, Chief of Medicine – Immunotherapy and Auto-immune diseases. We received a response to call our insurance provider, TRICARE-North (HealthNET), and get approved for an MRI at Northwestern. After getting Tricares' approval, we set up our MRI and initial meeting with Dr. Burt for July 26 and 27.

Daniel and I traveled to Chicago, and had an MRI on July 26 and returned the 27th to meet the famous, Dr. Burt. Daniel was accepted for the HSCT procedure, on a “compassionate basis” because he didn't fit into the strict clinical trial criteria. But Dr. Burt knew he could help Daniel with this procedure.


 

I would like to now add that my husband Daniel O Soerens, is a Medically Retired Combat Veteran. He has a 100% disability rating with the Veterans Affairs and also is considered “unemployable.” He served as Military Police for the 10th Mountain Division at Fort Drum, NY, for 13 years. He deployed with them four times;

Afghanistan, August 07 2003 to May 07 2004

Kandahar Air Field

OEF

Operation Mountain Viper

Operation Mountain Resolve

Iraq, August 10 2005 to August 12 2006

Baghdad

OIF

Iraq, September 06 2007 to October 22 2008

Kirkuk Air Base

OIF

PSD – Warrior Team

“CPL Soerens demonstrated technical and tactical leadership abilities by conducting numerous security missions. He was responsible of the safe escort for the Secretary of State Condoleeza Rice, in and around Kirkuk City. He was instrumental in ground security for the arrival and departure of the Vice President of the United States, Dick Cheney, and his staff. CPL Soerens' ability to provide security and safeguard all Iraqi officials and non government officials ensured success for all operations for the 1st BCT."

"CPL Soerens showed great leadership and courage when he directed his driver to quickly push through the kill zone and established security ensuring his team was safe when the 1st BCT PSD convoy came under direct enemy contact. Upon arrival of the Explosive Ordinance Disposal Team, CPL Soerens dismounted and began to clear two, three story buildings with his team."

"While assigned as Team Leader, CPL Soerens was also tasked as the Personal Security Officer for the 1st BCT Deputy Commander. He had a critical and difficult role to provide constant security for the 1st BCT DCO. CPL Soerens professionalism and motivation allowed him to quickly shift roles and conduct tough, realistic training in Kuwait that prepared him to perform team leader responsibilities on over 200 combat patrols while operating in the 1st BCT Area of Operation during Operation Iraqi Freedom 07-09"


 

Afghanistan, March 21 2010 to March 17 2011

Camp Khilagay

Instructor, Police Academy


 

JANUARY 2013


 

As I was in Watertown NY, visiting Daniel for a week, he started to express concern over some odd symptoms he was suffering from. It started with a numbness, from the top of his head, to forehead, to the top of his right eye (including the top, right eye lid), the right side of his back, to include his right hip, then shifted to his left hip. Sensitivity of bottoms of feet, when bare feet were used to walk on the floors. Hypersensitivity on entire body; meaning, any touch, was extremely painful. His speech was slurred along with Aphasia; the use of odd choice of words, the use of partial phrases, disjointed clauses and incomplete sentences. He was incapable of staying warm or cold enough (inability to thermoregulate). He would stumble, and fall, due to verigo, balance and drop foot. It took him an oddly long time to relax to empty his bladder. He showed difficulty with his higher executive functions such as planning, organizing and sequencing, which led to often confusion.

I brought him into the emergency room in Watertown, at Samaritan Medical Center. They sent us home with two new appointments for that week, an MRI and CT scan. We proceeded with both appointments and at the end of the week we were ordered to report back to Samaritan Medical Center. There we met with Dr. Mohsin Ali MD, from North Country Neurology. Dr. Ali explained to us that Daniel has all the signs of Multiple Sclerosis. With Daniels MRI scan showing lesion on the brain and plaque on his brain stem, and his physical symptoms, Dr. Ali was safe to say Daniel indeed has Multiple Sclerosis. He started Daniel on a high dose Prednisone steroid, intravenously, for five days. He ordered Daniel a spinal tap for the following week. Which I would not be at, because of my return home. His spinal tap results came back, and his spinal fluid was concluded that his spine was not infected. Daniels Multiple Sclerosis is based in his brain and brain stem.

Daniel was then started on Betaseron injections. He will now be faced with the already daunting task of remembering to give himself an injection, either in the butt, stomach, back of arms or thighs, every other day, for the rest of his life. The injections caused him painful injection sites; including swelling, redness, fluid drainage, black and blue skin discoloration. Along with lumps where his injections where administered, he had flu-like symptoms after EVERY injection. Daniel had a fever, chills, tiredness, sweating and muscle aches, every other day. This is what he was left living with.


 

SEPTEMBER 2013

During routine blood work, with Dr. Ali, they discovered that the Betaseron was lowering Daniels white blood cell count and fluctuating his liver enzymes (causing the yellowing of his eyes), along with headaches, pain, weakness and sleeping problems. Daniel was immediately taken off of the Betaseron.

(With most immune-suppressants , there is a medication wash out period, it can range from 4-6 months and maybe sometimes longer if blood results do not respond. It is so the prior failed medication can be completely “washed out” of the body's system.)

FOUR MONTH BETASERON WASH OUT


 

During the wash out period for Betaseron, Daniel had numerous “flare ups” or“exacerbations.” His first exacerbation was in October 2013, during the flare up, his symptoms are pretty consistent, hypersensitivity, balance ;walking issues, cognitive confusion and extreme fatigue. During flare ups, Daniel usually gets admitted through the Emergency Room at Samaritan Medical Center in Watertown, NY. Dr. Ali administers Daniel a five day dose of Prednisone, intravenously. Daniels symptoms usually subside quite quickly under the intravenous steroid treatment. His cognitive functions slowly, continue to worsen.

Daniel's second flare was in November 2013. His symptoms were consistent with his exacerbation in October, just a month prior. Along with the same symptoms, he received the same treatment, with the Prednisone, intravenously, and the same outcome. Along with November, and October, Daniel continued to have flares in December of 2013 also. During the December exacerbation, Daniel lost complete control of his legs, resulting in a collapse in the Emergency Room. Treatment proceeded just like the prior flares, Daniel received the five days of intravenous Prednisone, and symptoms subsided.


 

JANUARY 2014


 

Daniel completed his four month of wash out and his blood work came back clear, so Dr. Ali proceeded to administer a new medication. Dr. Ali chose a newer, oral tablet, called Gilenya. Gilenya, like explained above, is an oral tablet, taken once-a-day. Daniel had to be monitored for 6 hours after taking his first dose of Gilenya, due to Gilenya lowering your blood pressure. Daniels doctor, Dr. Ali, set up his first dose to be administered to Daniel while he was on leave. We drove to a clinic in Milwaukee WI and his blood pressure and heart rate were monitored for 6 hours after his first tablet. No abnormalities were observed during the monitoring, so we were sent home with his new medication. Daniel experienced little to no side effects with Gilenya. His next routine MRI and blood work showed promise. The MRI showed lesion improvement, with no new lesions, and the blood work came back clear. We were super excited about the positive improvements with Gilenya, it gave us such hope. Who wouldn't want to take one pill a day, instead of injecting yourself every other day and having flu-like symptoms?


 

APRIL 2014


 

On April 11, 2014 Daniel left Fort Drum, NY, his first day of leave, before Retirement. Daniel planned to serve proudly in the Military for the 20 years, required to retire from the Army. Instead, Daniel was forced to retire, only after 13 years, because of his diagnosis of Multiple Sclerosis. Before diagnosis in January of 2013, Daniel was preparing to deploy for his fifth time, and third time to Afghanistan. This was his life, the life he knew since the day he walked into the MEPS Station in Milwaukee WI, on September 11, 2001. The MEPS Station was later evacuated on the 11th due to the 9/11 attacks. Daniel was told that if he was to come back and finish his testings, it was inevitable, he was going to war. Daniel returned on September 13, 2001 and finished his testings. Daniel was 18 years old. Due to the Delayed Entry Program, he did basic training November 06, 2001 to March 29, 2002, in Fort Leonard Wood, Missouri. Daniel was stationed at Fort Drum NY, his first day was April 14 2002, and served as an MP proudly for 13 years.


 

MAY 2014

Daniels final retirement date is May 31, 2014. He proceeded to transfer his Multiple Sclerosis treatment over to the Milwaukee VA Medical Center and his out patient care to the Cleveland VA Outpatient Clinic in Wisconsin. During our first day of appointments, which there were five to six appointments scheduled all day. This is the day we met with the “MS Team.” The team consists of a psychology, physical therapy and neurology. The psychologist, talks to us about suicide, etc. The physical therapist makes you take 15 paces to and fro, and the neurologist, well lets put this nicely, probably has no idea what Multiple Sclerosis actually is and how it affects individuals. No compassion, no explanations, just very cold and treat you like a number and not a Veteran. The Milwaukee VA facility itself, looks like its been untouched since the 1980s. That goes with the technology and equipment. The floors and exam rooms look like they were last cleaned in the 80s also. My husbands labs were drawn in what appeared to be a closet sized room with a desk and a syringe container. Also I would like to add that the Doctors in the Milwaukee VA, now these are the doctors we were dealing with; Dr. Remler, Dr. Walsh; they do not speak to you like a person, they rather speak to you like you are a small child, not concerned with the details. You will hear more about this in the next section.


 

2015


 

In 2015, Daniel decided that the care he was receiving with the current doctors in the VA, was inadequate. This was due to the fact that we had a routine MRI done at the VA facility in Milwaukee,WI, and the doctor proceeded to tell us that the scans came back great, yet our case manager with the VA, indicated that the doctor did not even look at them. In return, we never got an explanation of the MRI results, compared to his prior ones. After complaining about the lack of care, and compassion at the VA, we were put into the Veterans Choice Program. With the Veterans Choice Program, we are able to seek outside VA care and the VA will pay for the care. This sounded astonishing, we were so excited. We chose a doctor at Columbia St. Mary's – Multiple Sclerosis Clinic, in Milwaukee WI. Dr. Connor is amazing, he wants to treat Daniel's MS aggressively and is open to options available, as long as he know it will improve Daniels way of living.


 

MARCH 2016


 

It was time for Daniels routine MRI and blood work. But since we were part of the lovely Veterans Choice Program, our doctor at Columbia St. Mary's can not perform the MRI's. In the VCP, you have to have all MRI's and blood work etc, done at a VA facility, makes sense right?No not really, see, this makes twice as much work for the Veteran, who was trying to get better care elsewhere but continuously having to go back to the same VA facility they were trying to avoid in the first place. So, Daniels doctor, Dr. Connor puts in a request for a routine MRI to the Milwaukee VA. The VA schedules the MRI and tells you when to be there, nice right? Nope! First off, at this time I am still fighting for Daniels disability rating and we are living on table scrapes. Second, because Daniel received no pay for three months separating from the Army, our car got repo'd and bills were mounted, so getting to a doctors appointment that we were not expecting, is pretty much impossible with three children under five.

On March 18 2016, Daniel receives his routine MRI and blood work at the Milwaukee VA. The MRI results read;

“Several of the larger lesions demonstrate signal drop out on T1 weighted sequences consistent with black holes and axonal loss.” “Corpus callosal and perivenrticular white matter changes which are thought to be slightly increased in size relative to new lesion in the dorsal medulla.” “New lesion within the posterior caudal medulla about the obex, this lesion measures approximately 5 mm in diameter but does not enhance.”

In laymens terms, he has a new lesion which does not enhance, also several of his older larger lesions have become black holes, which means they do not send signals out anymore. Think of the signal fall out as scar tissue on your brain.

Along with the new lesion and the signal fall out, Daniels white cell count was low again. Daniels doctor at Columbia St. Mary's discontinued the use of Gilenya.

Gilenya worked great for over a year, or so we think. Because the MRI was booked so far out, Daniels routine MRI was suppose to be at 6 month, and was done a whole 6 months late. If the VA would of let Dr. Connor at St. Mary's do the MRI sooner, we could of caught the progression sooner.


 

6 MONTH GILENYA WASH OUT


 

During the Gilenya drug wash out, Daniel persisted to worsen. His exacerbations began to be weekly, sometimes monthly. Daniels first flare was April 15, 2016, I brought him into the ER due to extreme vertigo, leg weakness, cognitive difficulties, hypersensitivity and numbness. The ER doctor at Memorial Medical Center in Sheboygan WI was not sure on how to treat Daniel. We first gave the ER doctor Daniels Primary care physician, at the VA but he could not be reached. Then we gave her our VA neurologists name, he too could not be reached. Finally she called Dr. Connor at Columbia St. Mary's. Dr. Connor gave the orders to give Daniel a high dose of prednisone, intravenously and we were sent home.

Three days later, Daniels symptoms worsened, instead of them normally subsiding. I brought him back to the ER, via the advice I received on the Veterans Affairs Nurses hotline. April 12, 2016 we were back in the ER, with the same ER doctor. This time we called Dr. Connor right away. Dr. Connor orders high dose prednisone, intravenously and five day, oral Dexamethasone (96 mg by mouth daily.)

The Dexamethasone side effects Daniel experienced were, increased hunger, spouts of anger, trouble sleeping and restlessness, for five days. After the steroid treatment, Daniels symptoms subsided.


 

Then May 13 2016,the same symptoms resurface. This time I called Dr. Connor during business hours and he called in a prescription for the five days of Dexamethasone, 96 mg orally. His symptoms seem to subside. With Daniels constant exacerbations, Dr. Connor calls us in to figure out our next plan of attack. Dr. Connor and Daniel discuss Tysabri or Lemtrada. These are once a month or once a year injections, you can read about these treatments above.

In order to get the new treatment paid for by the VA, we in return had to make an appointment to see Dr. Walsh at the Milwaukee VA. The very hospital that neglected Daniels care in the first place, we now had to get approval from. Does this make any sense to you? The Veteran Choice Program sounds great in the beginning, but in the long run, it makes a Veteran work twice as hard. Veterans Choice was designed, in my mind, to make it so that Veterans whom are dissatisfied with their care at the VA hospitals, to seek care outside the VA. So they, the VA, gives you the option of seeking outside VA care, but in order to get the VA to pay for your treatment or new medications, you must have a VA doctor go over, the outside doctors plan, before approving the treatment of medications.

As if that wasn't discouraging enough, when we met with Dr. Walsh at the VA in Milwaukee to get approved, by them to start Lemtrada or Tysabri, he expressed that the Milwaukee VA can not pay for Columbia St. Mary's to do the infusions, and that the Milwaukee VA did not have anyone trained to do the infusions. In hindsight, Dr. Walsh said no, to the infusions and instead gave Daniel a prescription for Tecfidera and Ampyra. If you read the treatment options in the above section. Tecfidera is the same drug, pretty much, as Gilenya. To recap, Gilenya was just washed out of Daniels system because it did not protect him from gaining more lesions, and it also did not suppress the immune system enough to prevent signal fall out, or abnormalities in Daniels white matter.

When Daniel was prescribed the Tecfidera, I was leary. Daniel started Tecfidera between May 19 2016 and June. When we got home I researched the drug. It was basically Gilenya but with a different name, still Daniel gave it a try. The ampyra is made to help with his leg control and weakness, and helped for about a week. The Tecfidera caused numerous of odd side effects. Daniels first dose of Tecfidera it caused him to turn completely red, and he explained that it burned from the top of his head to the bottoms of his feet, and this happened every day. Along with the “flushing” his mood was extremely unstable.

Daniel tried to continue the Tecfidera, despite the side effects, thinking that they would subside, they did not. In August of 2016 Daniel discontinued the use of Tecfidera and continued on the Ampyra. Before discontinuing use, Daniel had a flare on June 24, 2016, after starting Tecfidera, he experienced the normal symptoms; weakness of legs, cognitive difficulties, hypersensitivity, and extreme fatique. I called Dr. Connor at St. Mary's and he called in a five day oral steroid treatment of Dexamethasone.


 

Since August of 2016 Daniel has been on no treatment for his Multiple Sclerosis and has had numerous of exacerbations. Dr. Connor has treated his exacerbations with Dexamthasone every time, and Daniels symptoms subside for the time being.

Daniel continues to be on no medications, in hope that his HSCT therapy will be finally, financially approved by either the Veterans Affairs or Tricare.

Tricare was sent our first claim in August of 2016, they wasted no time in denying the treatment. Northwestern Medicine then appealed the denial three times, before receiving our third and final denial the end of September 2016. ( Even though I have come to find out that Tricare covered a Veterans HSCT treatment in 2014, in Chicago, for MS)

I then, started panicking and calling State represenatives, news stations, and the press. Spreading Daniels story around to the Government officials in hopes, someone would step up and fight for a Veteran.

In October of 2016, I took a long shot and sent our claim into the VA in Milwaukee with the help of our case manager through the VA in Green Bay, Ida Umentum. Ida called us with weekly updates, and informed us that Dr. Remler was on vacation for a week. After Dr. Remler returned and looked over our claim, he asked for an opinion from a neurologist at the Jessy Brown VA in Chicago, then sent it to the Chief of Medicine, Dr. Anton in Milwaukee. In return, Dr. Anton sent it to the Chief of Staff, Dr. Erdman and our claim was denied as soon as the first week in November, 2016.


 

While fighting for Daniels HSCT therapy, Dr. Connor at St. Mary's has expressed the urgency to start him on some sort of “maintenance drug”, because he said, we are playing russian roulette because Daniels Multiple Sclerosis has become so aggressive. With each exacerbation, every flare, Daniel has a greater possibility that his symptoms will not continue to subside, instead become permanent disabilities.

If Daniel would start on Lemtrada or Tysabri, he will no longer be eligible for the HSCT therapy, because Lemtrada and Tysabri give you a greater chance of being infected with the JC virus, which in the long run will give you a brain infection, with the side effect of death.


 

BREAKING DOWN THE TREATMENT COSTS FOR MS


 

I would like to start with a few quotes from Dr. Burts articles.

“The drugs currently used to treat MS slow progression of disability" Dr Burt, Chief of Medicine-Immunotherapy and Auto Immune diseases.

"We show that one-time stem cell treatment can not only slow progression but also reverse disability."

Should the clinical trial be successful, investors will next consider the long term cost effectiveness of the stem cell therapy. Previous cost for treatment to slow MS progression is @ $47,000yr for the rest of the patients life.

"Stem cell therapy gets patients off lifelong treatments and gives them results that have never been seen before with this disease.”

 

 

FIVE YEAR OUTLOOK

 

 

Lemtrada’s approximate costs based on 2014 prices might be:

Years 1 & 2………….. $158,000

Year 3………………….. $60,000

Year 4………………….. $60,000

Year 5………………….. $60,000

Lemtrada would total $338,000 for drug costs over five years, which would place it right in the midst of all the other disease modifying therapies. Using the prices from 2013, here is a list of what their use over those same five years would cost:

Rebif……………. $318,240

Copaxone……….. $360,000

Avonex………….. $303,480

Betaseron………… $348,540

Tysabri………….. $283,145

Gilenya…………. $287,400

Extavia…………. $335,400

Tecfidera………. $319,200

Aubagio……….. $285,430

Since 1993, the FDA has approved 12 disease-modifying therapies (DMTs) to treat relapsing-remitting MS (RRMS). All are designed to suppress the immune system to one degree or another. These drugs cost about $5,000 per month and they must be taken indefinitely, since relapses will occur if the drugs are stopped. While patients now have many options to stave off disease progression, no DMT has been proven to reverse disability.

HSCT costs about $125,000 per patient. “Although we haven’t done a cost analysis, given how expensive Tysabri is, and Fingolimod, [since HSCT is a one-time treatment] it should start paying for itself around 18 months,” Burt told Healthline.

“If you’re doing well on first-line therapies, interferons or Copaxone, good, that’s where you should stay,” Burt added. “But if you’re having frequent relapses, two or more a year despite those therapies … I think that’s the group that, rather than going to Tysabri or Fingolimod, should be given this therapy because it’s so much more beneficial. Plus, if you wait until you’ve had all those other [DMTs] then you increase the risk of this treatment.”


 


 

Today I sit and write this in hope, and faith that the VA will do the right thing for my Veteran. These men and women, unselfishly, and proudly serve this country in a way, many do not understand. They are trained and prepped to be these human machines. They undergo rigorous, and daunting daily training. They go to war for all of us. Do you understand that these Soldiers are also human beings? They are not soul less entities built by our Government. Yet they are brave individuals who put their needs and wants on hold to help fight together for the better good of each and every individual on this planet.

These individuals leave their families behind and venture into the war zone. Not because they want to, but because if they didn't, who would? They pack their gear, they prep their living wills, and prepare for the worst. Daniel did this four times and was preparing for his fifth. When they return from war, like Daniel, and develop a disability, they are quickly thrown into the Med Evaluation Board, Warrior Transition Unit (WTU) and quickly discarded of.

The WTU is designed to prepare a Soldier for Civilian life. What a joke!

While Daniel was in the WTU it should of went over how to deal with the Veterans Affairs, or how to file for Social Security Disability insurance or how to fight for your final disability rating. But instead it taught Daniel how to write a resume, he will never use again, because his inability to work, because of his aggressive form of MS. It made him pick a job that he would pursue in the civilian world and how all his years of training can transfer as resume builders. But not in Daniels case, he just rummaged through jobs, he would never be capable of fulfilling. Daniels dream was always, serving his country for the 20 years required to retire, and then following in his fathers footsteps and becoming a local Fire Fighter in his hometown. Daniels dream is no longer attainable.

And now we sit.

Daniels Multiple Sclerosis is a service connected disability and all his MS related disabilities are also service connected. So the VA has taken responsibility in giving Daniel this disease, and disabilities but are failing to treat him for them, properly.

I have exhausted my efforts with the chain of command at the Milwaukee VA. I have left numerous of messages with the Chief of Medicine's Secretary, Dan, and the Chief of Staffs, staff and they all go unanswered. I have now pursued the Government route. Our Senator came to our town, and I sat in the front row with Daniels story and pictures of him in the service, I was not going to leave without talking to him and making him aware on what our Veterans are dealing with for healthcare. Senator Ron Johnson was gracious and has been working with me ever since. I have also reached out to our Congressman Glen Grothmans office and am also working with them. Tammy Baldwins office in Madison has told me that they will not pursue the matter any further and washed their hands of us, within 5 days. Including the local level, I have also reached out to our President of the United States, along with our President-Elect Donald Trump. I have left a message at Mike Pences office in hope to get as many aware on what is really going on, in the real world, with our Veterans.

Since the beginning of November 2016, we have been denied, but I now have the case flagged by three Government offices, including the White House. I also have proof that numerous of Veterans have had either the VA or their Tricare cover this exact procedure for Multiple Sclerosis, in Chicago with Dr.Burt.

Now my question to you is,

“Should our Veterans, the ones who go to war for us, have to fight this hard at home for proper heath care?”


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 

REFERENCES

Betaseron.com

Gilenya.com

http://www.stemcellresearchfacts.org/dr-richard-burt/

http://www.healthline.com/health-news/stem-cell-transplants-first-ms-treatment-reverses-disability-012215

http://www.webmd.com/multiple-sclerosis/guide/ms-treatment#1

https://multiplesclerosis.net/living-with-ms/lemtrada-economics-ms-treatments/


 

 

$960

 

0% Raised of $200,000 Goal

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  • Tracy Steinbeck

     

  • Michael Fanesi

    $100

  • Rachel Gross

    $50

  • Anonymous

    $25

  • Anonymous

    $50

  • MSG Paula Jennings

    $60

  • 1SG(R) Michael Scanlon

    $100

  • Jason Carvel

     

  • Grandpa & Grandma

    $100

  • Eric Wesel

    $25

  • Felicia Dahl (Brandyburg)

     

  • Anonymous

     

  • Anonymous

    $50

  • Warpig

     

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Organized by

April Soerens

This is a direct to organizer fundraiser.

Donor Comments

Warpig

Warpig

Hope everything works out for you & the family brother... 1 year ago

Anonymous

ANONYMOUS

DONATION: $50

You were right, "Once a Soldier, Always a Soldier." I was an MP for 10 years and I know what you mean. Keep fighting, even if you're not fighting for yourself anymore. Fight for your family. They love you and need you. God bless you and your family. 1 year ago

Anonymous

ANONYMOUS

Praying for your health and that you'll be able to get the treatment that you need--don't give up! 1 year ago

Felicia Dahl (Brandyburg)

Felicia Dahl (Brandyburg)

Keep up the good fight and hang in there!!! 1 year ago

Eric Wesel

Eric Wesel

DONATION: $25

1 year ago

Grandpa & Grandma

Grandpa & Grandma

DONATION: $100

donating & praying. So sad that the Gov. does not come through 1 year ago

Jason Carvel

Jason Carvel

1 year ago

1SG(R) Michael Scanlon

1SG(R) Michael Scanlon

DONATION: $100

1 year ago

MSG Paula Jennings

MSG Paula Jennings

DONATION: $60

Cherry you got this and I got your back. Sending prayers to you and your family. Let me know if I can help.... 1 year ago

Anonymous

ANONYMOUS

DONATION: $50

Hope you reach your goal. Stay strong, and remain hopeful. 1 year ago

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