May 2015

Financial Support Programs Offered By Pfizer

Laurie Kelley May 31, 2015

There are a lot of great programs available to people in our bleeding disorder community. I’ve been sharing some of them recently. Here’s another great one from Pfizer!

Managing hemophilia is complex. Patients and caregivers face
medical, emotional, social and financial challenges. Understanding therapy is
just one part of the equation, Pfizer strives to provide support beyond science
and innovation. The company offers many educational resources and financial
assistance programs for eligible patients who infuse with Pfizer Hemophilia
Recombinant Factor products.

·
Factor Savings Card Program provides financial
support to eligible patients to help cover out-of- pocket co-pay, deductible,
and coinsurance associated with their Pfizer factor costs. Eligible patients
can save up to $5,000 annually. The Card is not health insurance and will only
be accepted at participating pharmacies.

·
RxPathways is a comprehensive assistance program
that provides eligible patients with a range of support services, including
insurance counseling, co-pay assistance and access to medicines for free or at
a savings.

·
Pfizer Trial Prescription Program allows
eligible patients new to Pfizer factor products to receive a one-time supply up
to 20,000 IU at no cost.

To learn more about these programs, visit the financial
support page on Hemophilia
Village. On this site you’ll also find tips and resources to help you and
your family navigate the various challenges that can arise at different life
stages. Another great way to stay up-to-date on the support provided by Pfizer,
and to hear from others in the community, is to join the conversation on the Our Hemophilia Community Facebook page.

This content was provided and sponsored by Pfizer.

Great Book I Just Read
Mustaine: A Heavy Metal Memoir [Kindle]
Dave Mustaine and Joe Kayden

Sometimes called the founder of thrash metal, Mustaine shares his troubled and abusive childhood, his calling to music in the 80s, his short foray as a founder of Metallica, his sudden ouster, and his inspiration to form Megadeth, one of the top thrash and heavy metal bands of all time. Mustaine was driven to create, recreate, fight others and destroy himself with drugs. That he is alive is a miracle. Burning through 17 different band members in a four piece band, Mustaine is not easy to deal with. Here he is candid, acknowledging his eternal grudge against Metallica and his own abrasive personality. Meeting his wife turned his life around, though not enough to stay off drugs. Finally, in a surprise ending, he finds peace and sobriety. I only wish the book could have delved as much into his creative process (how did he write such amazong songs?!) as it did into his drug usage and rehab.
Four/five stars.

Submit Your Application for HeroPath™ Today!

Laurie Kelley May 24, 2015

Navigating adulthood is challenging enough—from asserting your independence, to building relationships, to choosing a direction in life. Living with hemophilia can make this life stage even more complex, which is where HeroPath™ comes in. Apply to HeroPath™ today for the chance to work with talented life coaches and your peers to learn new skills and techniques to help you excel in your daily life and chart a clear path forward.

What: For the second year in a row, Novo Nordisk has partnered with Jeffrey Leiken, CEO at Evolution Mentoring International, to offer HeroPath™, an empowering program that offers life coach and peer support to help teens ages 16-19 and adults ages 20-25.

Who: Given the hemophilia community’s positive feedback from HeroPath™ 2014, Novo Nordisk has expanded the program so that all people with hemophilia A or B (with or without inhibitors) ages 16-25 who live in the United States and are privately insured may apply.

How: Visit the HeroPath™ website to complete your official HeroPath™ application, which requires answering several multiple-choice questions and providing a short written explanation (up to 150 words) of why you are a great fit for the program. Not one for writing? You can provide a 60-second video explanation instead—just upload your video to YouTube™ and paste the URL into the application form. Check out the website for sample responses to help get your creative juices flowing.

When: All entries must be received by 11:59 p.m. EDT on Monday, June 15, 2015. Jeff will select up to 50 participants based on their answers to the multiple-choice questions and the level of creativity and original thought conveyed through their short-response or video entries. Entries will be judged on a rolling basis. Applicants will be notified of their selection as early as Tuesday, June 16, 2015.

Why: Up to 50 selected participants will attend one of two unforgettable kickoff weekends with Jeff, his team of expert coaches, and fellow peers.

Kickoff one: July 31-August 2, 2015
Up to 25 participants
Ages: 20-25
Location: Philadelphia, PA

Kickoff two: August 7-9, 2015
Up to 25 participants
Ages: 16-19
Location: Philadelphia, PA

Spanish-speaking coaches and Spanish interpreters will be on-site at the kickoff weekends. After the kickoffs, all participants will continue to receive personalized, one-on-one monthly coaching for the following year.

See what some of last year’s participants had to say about HeroPath™:
· Introducing the HeroPath™ Program
· HeroPath™: What This Program Means to Me

What parents need to know: HeroPath™ isn’t just a weekend retreat—it’s a yearlong program designed to help offer participants the tools to identify:
·        Their professional career paths based on interests, strengths, talents, and natural inclination.
·        The types of people to associate with personally and professionally
·        The kind of person they want to be (Jeff and his team will help participants give voice to their own values)

For some participants, it may be their first time away from home. HeroPath™ will allow them to meet peers with similar experiences and challenges. The program is structured to provide participants with resources to help them better manage their state, stay focused, and make better decisions under pressure.

Selected participants (and guardian if the participant is younger than 18) will receive travel details 2 to 4 weeks before the kickoff weekend once all their required paperwork is complete. A planning team also will be available via phone and e-mail in the weeks leading up to the kickoff to address outstanding questions. Details will be included in the official program welcome letter.

This is a paid announcement by BioSector 2

Navigate Hemophilia with Nava!!

Laurie Kelley May 17, 2015

Here’s a great program offered by Baxter Healthcare Corporation.

Baxter’s “Nava” offers patients with hemophilia personalized support. Nava is a website available 24/7, with a Call Center/Live Chat available for more personal assistance. Nava offers:

· Personalized support program that gives you personalized tools and resources to help you successfully manage school, career, family and other life situations.

o Connects you with insurance experts to help you navigate the maze of coverage issues.

o Connects you with mentors who can offer support and real understanding as someone who’s walked in your shoes.

o Schedules one-on-one coaching to help you set and achieve your life goals – career, education, relationships, a healthy lifestyle and more!

· Open and free to anyone within the bleeding conditions community regardless of treatment

o People with bleeding conditions

o Parents of children with bleeding conditions

o Supporters or other family members

o Healthcare professionals

For more info: nava.baxter.com

This announcement is a public service, sponsored by Baxter Healthcare Corporation.

Great Book I Just Read

The Worst Hard Time: The Untold Story of Those Who Survived the Great American Dust Bowl [Kindle]

Timothy Egan

The sobering story of the settling of the American prairies in the late 1890s, with the encouragement of government, and consequent stripping of the land by overfarming. The overfarming destroyed the trees and ground cover that would have protected from dust storms. In time, parts of Kansas, Texas, Oklahoma and Nebraska were called the Dust Bowl as enormous walls of dust, thick enough to braise skin, barrelled down on inhabitants for years. Fine, powdery dust infiltrated every item in its path. Babies slept in filthy cribs, covered with dust. Cattle died as their bellies filled with dirt; children died, some before turning one from “dust pneumonia.” Crops failed, careers destroyed. The book chronicles several personal stories, and also reviews the government attempts to restore the land through Roosevelt’s New Deal. Be prepared to be staggered by the suffering, the history, the beautiful writing style, and learn deeply about a sad time in our country’s history. Four/five stars

A Love Like Blood

Laurie Kelley May 11, 2015

Our colleague Richard Atwood of North Carolina has found yet another interesting literary piece about hemophilia and…. vampires. Why not? Vampires seem to be everywhere in literature and film, and include superheroes and even Abe Lincoln!

A Love Like Blood (by Marcus Sedgwick 2014, New
York, NY: Pegasus Crime. 310 pages) is a novel labeled as crime fiction, and begins with an interesting love story and morphs into a disturbing thriller.

Richard writes: In
1944, Dr. Charles Jackson, a newly qualified 25-year-old house officer at
Barts, is called up as a captain in the Royal Army Medical Corps, Field Hygiene
Section. When Paris is liberated, he visits an antiquities museum at
Saint-Germaine-en-Laye where he stumbles upon a man in a bunker drinking blood
from a woman. Stunned into inaction by either fear or curiosity, Charles merely
turns and leaves. After the war, he takes a specialism and returns to Cambridge
as a 31-year-old consultant in haematology. In 1951 while attending an
international conference in Paris to read a paper on leukemia, Charles spots
the man in the bunker dining with a beautiful woman in her early 20s. With a
bit of sleuthing, he discovers the man’s
name to be Margrave Anton Verovkin, an exiled Estonian count, and the woman to
be Marian Fisher, an American PhD student at the Sorbonne. Marian is
researching for her dissertation how blood is used in Dante’s The Divine Comedy.
Charles falls in love with Marian and invites her to visit Cambridge over
Easter. In Paris that June, Charles finds Marian to be paler and ill, and he
warns her of Verovkin being dangerous. By August, Charles is told that Marian
has returned to America for a heart operation. Charles then focuses on his
haemophilia research in Cambridge. His small research unit investigates
improved plasma products to help haemophiliacs, if not find a cure. Charles
marries Sarah, who then tragically dies. In 1961, Charles receives a letter
from Mrs. Fisher in New York stating that Marian had died in 1951 in Paris
where she is buried, and hinting that Marian had loved Charles. Following scant
clues, Charles travels to Paris to learn of Marian’s brutal murder, and then to Avignon to discover Verovkin
conducting a blood-drinking religious ceremony. Verovkin’s followers abduct and beat up Charles before the French
police send him home. Charles inquires into clinical vampirism, or blood
drinking. An invitation to visit Professor Enzio Mazzarino in Rome to discuss
his haemophilia research turns out to be a ruse, but Charles encounters an
underage prostitute. Charles returns to London to be with his dying father and
the police raid his house to find planted photographs of Charles with the
prostitute. Fired from his job and fleeing the police for paedophilia, Charles
takes his inheritance and hides in Scotland. Studying clinical vampirism,
specifically the psychologically disturbed and their relationship to blood,
Charles becomes more paranoid. He accidentally kills a private detective, who
he hired to find Verovkin, when the detective instead stalks Charles. Hiding in
London, Charles learns more of the perversions and taboos of blood. When the
newspapers report that Giovanna Scozzo, an Italian female haemophiliac, will be
treated at the Swiss Haemophilia Clinic in Lausanne due to the generosity of a
rich Swiss philanthropist, Charles, without a passport in 1964, makes his way
to Switzerland. The abducted Giovanna is the bait for Charles, who is also
abducted to Verovkin’s
chateau in Yugoslavia. Imprisoned there, Charles is forced to drink blood to
survive. By cutting off his thumb, Charles escapes his wrist shackle and burns
down the chateau. Still wanting to avenge the murder of Marian, Charles
searches three years for the scarred Verovkin, finally finding him in Italy in
1968. Charles cuts Verovkin’s
neck with a knife to kill him, eerily realizing his personal desire for blood.

“I’ve chased him for over twenty years, and across countless miles, and though often I was running, there have been many times when I could do nothing but sit and wait. Now I am only desperate for it to be finished.”

The budding
romance of a hematologist specializing in hemophilia and a beautiful woman
never reaches fruition, yet the protagonist seeks revenge for the murder of his
unfulfilled love, using his hefty inheritance to fund his obsession. The novel
lists numerous minutiae about blood. Hemophilia is not necessary for the plot,
but it adds more substance and the appropriate name for the love of blood.
Oxford is strangely attributed with the use of snake venom as a treatment of
hemophilia in 1961 (it was the 1930s), and more appropriately for the
identification of additional clotting factors at that time (pp. 99, 155). This
is the first adult novel by the prolific award-winning author of young adult
fiction.

One Giant Leap Backward for Treatment: Novitas, WTH?*

Laurie Kelley May 3, 2015

(see update in red below!)

Anyone
who knows me, knows I don’t swear. Really. Went through childbirth three times,
twice without anesthesia, and not a foul word passed my clenched teeth. (See translation
for “WTH” below.) But when I read a recent decision by a payer, I was tempted
to let loose.

Novitas
is a Medicare administrative contractor for two jurisdictions: 1) AR, CO, NM, OK, TX, LA, MS and 2) PA,
DC, MD, DE, NJ, and parts of northern VA. That’s a lot of people impacted by their decisions. Remember I’ve been
warning you and warning you, since 2005 to be exact, that payers would be exerting more infleunce over our treatment? You do remember the “Coming Storm”
article, yes?

Well,
it’s happening. And the community has been vigilantly safeguarding our right to
access to therapies and treatment. First payers got in on the specialty
pharmacy gig. Cigna, Aetna… they all started forming their own specialty
pharmacies and could legally force you to switch to use theirs. That was a game
changer.

Next,
treatment changes. So many HTC people told me this wouldn’t, couldn’t, mustn’t
happen. How could a payer, an insurance company, have a say in what a physician
prescribes?

Wake up. Novitas has mandated in
those jurisdictions above that if patients use NovoSeven RT® (to treat their inhibitor)
they must infuse under the direct supervision of a physician. Like, in his office! And NovoSeven usually requires every
two hour doses to resolve a bleed.

This decision is called “local
coverage determination (LCD)” and it is troubling:  Novitas writes “Factor VIIa
… is indicated for the treatment of bleeding episodes in hemophilia A or B
patients or with acquired hemophilia. NovoSeven, as noted in the Prescribing
Information for the product, should be administered to patients only under the
supervision of a physician experienced in the treatment of hemophilia. Novitas
notes this product would not be appropriate to be used in a self-administration
situation and the supervision should be ‘direct’ as in ‘incident to’ in an
office under Part B Medicare.”

Uh oh. As noted in the Prescribing Information? True. The Novo Nordisk
PI that comes with the product does say “Administer NovoSeven RT to
patients only under the supervision of a physician experienced in the treatment
of bleeding disorders.” Yikes. It’s not what we meant to say! But Novitas is
taking us literally, so yeah, they do have a case there.

But, according to the Social Security
Act, Medicare allows for hemophilia patients deemed competent to administer at
home. Without medical supervisions. Like, the way we have been doing it for
years. And it doesn’t say everyone except
NovoSeven users. So Novitas, yeah, you are restricting treatment against what the federal government allows.

And NHF’s MASAC recommendation #227
specifically says patients should always keep doses on hand for emergencies
(like, at home).

So what’s a manufacturer, pharmacist, or patient to do?

Well, Barb Forss of Washington figured that
one out. She’s a severe FVII deficient patient who self-infuses NovoSeven RT
daily for prophylaxis, and every 3 hours for a bleed, until it’s resolved.
She’s been using this product for over 14 years. Is she supposed to
go to her HTC every time she needs treatment? She would have to move in with
her HTC team whenever she as a bleed. I hope they have a nice room with a view for
her there.

But Barb doesn’t want a new apartment in a
hospital. She wrote to Novitas, and said, “I went undiagnosed for 47 years. I
was hospitalized over 50 times and tethered to an infusion pole for days and
sometimes even weeks. If they threw enough [fresh frozen plasma] at me, I
would eventually stop bleeding, then sometimes start again after being released
from hospital. You can’t imagine how the quality of my life has improved
being able to self-infuse my NovoSeven and avoid hospitalization from bleeding
for the first time in my life.” She adds: “If this decision were to come down
in WA state when I’m on Medicare next year, that would mean I would need to
drive 220 miles roundtrip, daily, just for my prophy infusion at my HTC in
Seattle. And I suppose just bring an overnight bag and camp out at my HTC
for the duration of any internal bleeds so that I could be monitored by my
doctor, right?”

I think Barb is close to swearing.

In case Novitas still doesn’t get it, she
adds: “Please reconsider this determination. Every patient I know
who uses NovoSeven can self-infuse blindfolded, it’s as easy as pie and does
not require a doctor to be there.”

And
Novo Nordisk wrote in as well, asking to change the PI text to “Initiate treatment with NovoSeven RT
under the supervision of a qualified healthcare professional experienced in the
treatment of bleeding disorders.” Then the patient can take over (like we always
do).

I
know the Hemophilia Alliance, NHF and HFA are all mobilizing to get this
rescinded.

But
time is running out. This decision took effect April 9. Barb tells me there is
a 45-day response window. We need to let Novitas know this is not a good
decision, and must be rolled back.

Noviats does allow you to challenge the decision,
but only individually: “If changes or revisions to the policy are to be
considered, you must submit a LCD Reconsideration request which can be found on
our website at: http://www.novitas-solutions.com/webcenter/spaces/MedicareJL/page/pagebyid?contentId=00007706. This process is a mechanism for interested parties to
request a revision to an LCD. Requests must be submitted in writing, and
must identify the language that the requestor wants added to or deleted from an
LCD. Requests must include a justification supported by new evidence, which may
materially affect the LCD’s content or basis.”

Blah. Lots of words and work. But we will do
it, until our community rolls it back. Hey, if we can get ABC to eat their
words about hemophilia being a result of inbreeding, and have them redo a sitcom,
surely we can get Novitas to change this horrible decision.

Ironically, in the signature of the email of
the Novitas CMD Research Analyst, Medical Affairs, who is responding to the
community, is this thoughtful little quotation:

“It is not what you do for your
children, but what you have taught them to do for themselves, that will make
them successful.” –Ann Landers

That means
everything except self-infusion with Novo Seven RT, I guess.

For more
info and to get involved, contact NHF at 212.328.3700,
Contact the Novitas rep at (717) 526-3785.

*What
the heck?

Great Book I Just Read

Dead Wake: The Last Crossing of the Lusitania

Erik Larson [Kindle]

Larson is one of America’s best historical storytellers and his latest
book, on the 100th anniversary of the sinking of “Lucy” on May 7, 1915,
is fantastic. He deftly weaves together WWI history, politics, engineering of
these empresses of the sea, and personal stories of individuals on board. A
tragic tale, Larsen shows how plenty of intel was available that could have prevented
the sinking of Cunard’s masterpiece by a single torpedo from U-20 and the
deaths of over 1,700 people. Still, no one would believe that Germany could
fire upon a passenger ship. Contrary to popular belief, the sinking did not
bring the US into the war, not right away. Another 2 years would pass. Five/five
stars.

UPDATE 5.12.15 from NHF: “NHF is aware of the Medicare contractor, Novitas’ new local coverage determination on clotting factor coverage and its policy that patients infusing NovoSeven may not self-infuse in the home. NHF staff, joined by HTC Medical Directors from LA and PA have spoken with Novitas’ Medical Director about our concerns with this policy and have provided Novitas with requested literature on this subject. In addition, MASAC, at its last meeting passed a resolution recommending that self-infusion of inhibitor treatments is the current standard of care. This information will also be sent to Novitas.

We suggest that patients on Medicare living in states under Novitas’ jurisdiction, who are on NovoSeven talk to their HTC about the impact of this policy on their care. Together with the HTCs, patients can determine whether there is a need to contact Novitas. “