Register For The “Give A Gift Of Breath” Motorcycle Ride 2014

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The Second Wind Foundation for Pulmonary Fibrosis is proud to announce the second annual “Give A Gift Of Breath” motorcycle ride.  

The ride is on September 13th 2014 and begins at
the Plumbers and Pipefitters Hall
161 Londonderry Turnpike, Hooksett. 

Registration begins at 8am and kickstands up at 10:30am.

The cost is $25 dollars per bike and $10 per additional rider.
All proceeds go to the Second Wind Foundation.

After the scenic ride, enjoy some great food from the Puritan Backroom 
(special thanks to Chris Pappas owner of the Puritan Backroom, for sponsoring the event).

  There will also be entertainment and fellowship.

JUST ANNOUNCED
Rik-Shaw Band will be playing after the ride! 
Click Here to read more about them. 


Bikes and Riders




2014 SW4PF Ride Flyer (PNG)

Click here to download a PDF version of this flyer
to print and share with your friends and co-workers. 

The event is now being featured at MotorcycleMonster.com

Motorcycle Rally Calendar

16 Businesses Participated in “The Second Wind Foundation For Pulmonary Fibrosis Awareness” Week

Auburn, NH — 15 businesses supported the Second Wind Foundation For Pulmonary Fibrosis by Participating this past week in our “Second Wind Foundation For Pulmonary Fibrosis Awareness” Week.  Businesses sold paper doves and displayed them in their business for the week.  The annual charity fundraiser brings in much needed funds to help support families suffering from Pulmonary Fibrosis.

Pulmonary Fibrosis is a rare lung disease that creates scar tissue inside the lungs, making it harder and harder to breathe. Right now there is no cure for Pulmonary Fibrosis, and thanks to donations from the Second Wind Foundation, new research is helping to find a cure.  Pulmonary Fibrosis effects 500,000 people in the US.

Ron and Marylou Geoffroy started the Second Wind Foundation, after Marylou was diagnosed with Pulmonary Fibrosis. They started the foundation to help raise awareness to a relatively unknown disease, and to help raise money for research.

“I am very grateful to all the businesses who supported the Second Wind Foundation by selling doves at their local business,” said Ron Geoffroy, President of the Second Wind Foundation for Pulmonary Fibrosis. “Thanks to their generous support, and continued donations, we will continue to help people who are suffering from Pulmonary Fibrosis.”

“We are pleased to announce that these businesses raised $500 dollars for the Second Wind Foundation,” continued Geoffroy. “Due the popularity and success of this event, we are already considering expanding the fundraiser to include more local businesses in the Manchester area, and making it a month long event.”

The Second Wind Foundation would like to thank all the people who donated and the businesses that helped us during the event.  We look forward to next year!

For Bruce An Interstitial Pulmonary Fibrosis Diagnosis Is Not Holding Him Back Yet

Image of Mount Monadnock by Ed Holen

Image of Mount Monadnock by Ed Holen

Bruce is a 67 year old man, who was diagnosed with Interstitial Pulmonary Fibrosis in 2012.  In 2008 Bruce found that he was having difficulty breathing during hikes that he took while working at one of his favorite hobbies, Geocaching.  If your not familiar with Geocaching, Google the term and you will see that being part of this fun, family friendly hobby relies on some physical ability.  Bruce has been doing this for over 11 years.  In 2009 Bruce went to a doctor and they performed a Pulmonary Function test.  The test showed some oxygen deficiency during exertion.  The doctor he was seeing at the time diagnosed Restrictive Lung Disease.  Restrictive and Obstructive lung disease is when you cannot either completely inhale or exhale the air from your lungs, thereby feeling short of breath.  The doctor provided him with an inhaler and suggested that would help.  It didn’t help Bruce at all.

Bruce told us about his various work life.  Bruce spent 2 years in the Navy as a welder and sheet metal worker and 11 years in the Navy Reserve. Also worked in the NH Air National Guard for another 9 years as an Air Frame repair technition. While in the Navy he experienced some type of gas poisoning from welding galvanized metals.  He was told the condition would go away and he spent a week recovering.  After the Navy, Bruce worked in the Sylvania plant here in Manchester NH, making light bulbs where he had to deal with many chemicals and gases such as silica and mercury.  After Sylvania he worked for the Elliot hospital as a HVAC technician.  Each of these jobs had some type of influence on him breathing in various gases.  This may or may not have had an impact on his disease.  There is no known cause for PF, and there are numerous and various conditions, both physical and mechanical, that possibly could have an influence in developing PF.

In 2012 Bruce reported for his yearly physical during which his doctor again suggested additional pulmonary function testing.  After his test, the pulmonologist suggested Bruce get a lung biopsy to further determine what was going on.  The biopsy results were positive for Interstitial Pulmonary Fibrosis. The physician suggested to Bruce that he get his affairs in order because he only had 3-5 years to live.  Bruce was devastated.  How could a doctor say that to someone?  Bruce went and found another doctor in the fall of 2013.  At that point Bruce was having difficulty breathing during exertion.  As you remember Bruce is a Geocaching participant and regularly has to hike to locations to find his Cache.  Bruce was finding that he was slowing down and seemed to need to stop regularly to catch his breath.  His doctor recommended that he start using oxygen during exercise to supplement his breathing.  He is presently using 3 liters during his hikes or when out in the yard doing work.

Bruce has also tried some clinical drug trials to determine if they would help.  He applied for the Ascend Trial for Pirfenidone, (click here to find out more about Pirfenidone) and the Gilead GS-6624 Trial. Both of which didn’t work out as his condition didn’t meet there needs for the trial. Bruce has recently completed an application for another clinical trial, Nintedanib, that is hoping for FDA approval.  Bruce feels that being involved in the clinical trials to determine if it would help him have a better quality of life or help to reverse or slow the progression of his condition, is something he wants to do for himself and other PF patients.

Having PF is significantly life changing to anyone but Bruce says that it has changed his life some but not slowed him down too much.  He continues his Geocaching and enjoys his time with his family and traveling.

The Second Wind Foundation would like to thank Bruce and his family for providing his story.  We urge others to help spread the word about what they live through in dealing with Pulmonary Fibrosis.  If you’re interested in telling you story to share your experience with others, please contact us at info@secondwindforpf.com.

Nintedanib Slows IPF Progression

Published: May 19, 2014

By Crystal Phend, Senior Staff Writer, MedPage Today
Reviewed by Zalman S. Agus, MD; Emeritus Professor, Perelman School of Medicine at the University of Pennsylvania

SAN DIEGO — The novel kinase inhibitor nintedanib slowed progression of idiopathic pulmonary fibrosis (IPF) but the effect on exacerbations was less certain, two pivotal trials showed.

The oral drug cut decline in forced vital capacity to an annual loss of 114.7 ml versus 239.9 ml with placebo in the INPULSIS-1 trial and to a similar 113.6 versus 207.3 ml with placebo in the INPULSIS-2 (both P<0.001), Luca Richeldi, MD, PhD, of England’s University Hospital Southampton, and colleagues found.

Acute exacerbations were significantly delayed in the latter trial with a hazard ratio of 0.38 versus placebo (P=0.005), but the HR went nonsignificantly against nintedanib in the first (HR 1.15, P=0.67), for a nonsignificant pooled result (HR 0.64,P=0.08), they reported at the American Thoracic Society meeting.

The findings were reported at a late-breaking clinical trial ATS session and simultaneously online in the New England Journal of Medicine.

Nintedanib (formerly BIBF-1120) inhibits a variety of tyrosine kinase receptors, including platelet-derived growth factor, fibroblast growth factor, and vascular endothelial growth factor, implicated in the pathogenesis of IPF.

The drug had disappointed in non-small cell lung cancer, with small gains in progression-free survival and no impact on overall survival with one chemotherapy drug and no effect with another.

But these results in IPF, along with positive results with another novel agent reported alongside it, offer new hope for a condition that has a worse prognosis than many cancers,Gary M. Hunninghake, MD, MPH, of Brigham and Women’s Hospital in Boston, wrote in an accompanying editorial.

NEJM Editor-in-Chief Jeffrey M. Drazen, MD, agreed, calling the two trials groundbreaking given the lack of medical treatment options. But he noted that the drugs lessen but don’t eliminate the death sentence from IPF.

“We can’t quit,” he cautioned at the ATS session.

Also, “although these results are a major breakthrough for patients with idiopathic pulmonary fibrosis, we should be cautious in extrapolating these findings to patients who fall outside the recruitment criteria for these trials,” Hunninghake wrote. “The studies provide little insight into the use of these drugs in patients with more severe disease (FVC <50% of the predicted value) or with an acute disease exacerbation.”

Other questions worth answering are durability and impact of combination treatment or in other interstitial lung diseases, he noted.

The INPULSIS trials were replicate 52-week, double-blind, phase III trials that randomized a total of 1,066 IPF patients to 150 mg of nintedanib twice daily or placebo.

Patients had to have 50% or more of the predicted FVC, a diffusion capacity of the lung for carbon monoxide that was 30% to 79% of the predicted value, and high-resolution chest CT within the prior 12 months.

Concomitant use of the equivalent of up to 15 mg of prednisone daily was allowed if stable. Other IPF therapies were only allowed after 6 months for patients whose condition had deteriorated.

In each trial, response in FVC defined by less than a 5 percentage point absolute decline in the predicted FVC at 1 year was greater with nintedanib (INPULSIS-1 52.8% versus 38.2% and INPULSIS-2 53.2% versus 39.3%, both P=0.001).

Response defined by loss in predicted FVC not more than 10 percentage points at that point was greater with the drug in INPULSIS-1 (70.6% versus 56.9%, P<0.001) but not in INPULSIS-2 69.6% versus 63.9% placebo, P=0.18).

The proportion of patients with at least one investigator-reported acute exacerbation was similar in the nintedanib and placebo groups in INPULSIS-1 (6.1% versus 5.4%) but lower with the drug in INPULSIS-2 (3.6% versus 9.6%).

“Such exacerbations are relatively rare events in patients with idiopathic pulmonary fibrosis who are in clinical trials and are difficult to assess and categorize, which may explain some of the heterogeneity in our findings,” the researchers noted.

Health-related quality of life scores were similar between groups.

Numerically fewer nintedanib patients died from any cause over 1 year, but the difference wasn’t significant (5.5% versus 7.8%, HR 0.70, P=0.14).

“Although these trials were not powered to detect statistically significant differences in mortality, it is comforting that nintedanib resulted in a trend toward a reduced rate of death that mirrored the reduced rate of decline in lung function,” Hunninghake wrote.

The most frequent adverse event with nintedanib was diarrhea (61.5% versus 18.6% on placebo in INPULSIS-1 and 63.2% versus 18.3% in INPULSIS-2). Liver enzyme elevations were more common in both trials with the drug as well (4.9% versus 0.5% and 5.2% versus 0.9%).

Serious adverse events were similar between groups overall, but myocardial infarction was more common with nintedanib (1.6% versus 0.5% in INPULSIS-1 and 1.5% versus 0.5% in INPULSIS-2).

“The clinical significance of this finding is unknown, and further observation in larger cohorts is needed,” the researchers cautioned.

Article from ATS Conference Report

Every Breath Counts

Idiopathic pulmonary fibrosis is impacting the lives of as many as 132,000 Americans. With no known cause and limited disease management options, IPF is a devastating disease for patients to live with.

Through the powerful stories of patients and celebrities, this documentary takes an up close look at a disease that most people have never heard of.

Watch the Trailer | Watch the Show

Featured Experts:

Gregory P. Cosgrove, MD, FCCP

Associate Professor, Pulmonary and Critical Care
National Jewish Health, Denver

Gregory Cosgrove, MD, is a member of the Interstitial Lung Disease Program at National Jewish Health in Denver and an active participant in its clinical and research programs. A graduate of Hahnemann University School of Medicine, he completed his residency in Internal Medicine at Thomas Jefferson University Hospital and a fellowship at University of Colorado, Denver, in Pulmonary and Critical Care Medicine. At National Jewish Health in Denver, Dr. Cosgrove is Assistant Director of the Interstitial Lung Disease Program and is conducting research focused on the basic cellular and molecular mechanisms involved in the lung’s response to injury and predisposition to fibroproliferation. Dr. Cosgrove is Chief Medical Officer with the Pulmonary Fibrosis Foundation and is included in the “Best Doctors in America” list.

Kevin F. Gibson, MD

Clinical Director, University of Pittsburgh
Dorothy P & Richard P Simmons Center for Interstitial Lung Disease
UPMC Montefiore Hospital

Kevin F. Gibson, MD, is an associate professor of medicine in the Division of Pulmonary, Allergy, and Critical Care Medicine and assistant professor in the Department of Neurobiology, Anatomy, and Cell Sciences at the University of Pittsburgh School of Medicine. A graduate of UMDNJ-Rutgers Medical School, Dr. Gibson completed an internship and residency in internal medicine at Emory University Affiliated Hospitals in Atlanta, Ga., and pulmonary medicine and research fellowships at the University of Pittsburgh. He is board-certified in internal medicine, pulmonary medicine, and critical care medicine and has written 30 abstracts and articles. Dr. Gibson currently serves as president of the Association for Respiratory Health of Minorities.

Erica L. Herzog, MD, PhD

Associate Professor of Pulmonary Medicine
Director, Yale Interstitial Lung Disease Center of Excellence
Yale School of Medicine, New Haven

Erica Herzog, MD, PhD, is a Pulmonary Specialist and is the Director of the Interstitial Lung Disease Center of Excellence at Yale School of Medicine. Dr. Herzog received her Bachelor’s and MD degrees from the University of North Carolina at Chapel Hill. After her residency in Internal Medicine at Mount Sinai Medical Center in New York, she came to Yale to pursue a fellowship in Pulmonary and Critical Care Medicine where she also received her PhD in Investigative Medicine from Yale’s graduate school of arts and sciences. Dr. Herzog maintains an active clinical practice caring for patients with chronic pulmonary conditions, and performs basic and translational research aimed at developing preventative and treatment strategies for patients with interstitial lung disease.

Mark P Steele, MD

Professor of Medicine, Department of Medicine
Allergy, Pulmonary and Critical Care
Vanderbilt University Medical Center, Nashville

Mark P. Steele, MD, is a Pulmonologist, Allergist and Immunologist with 28 years of experience. He graduated in Medicine from the University of Illinois in Chicago with his residency in an affiliated hospital. Dr. Steele currently teaches and practices at Vanderbilt University Hospital in Internal Medicine, Pulmonary Disease, Critical Care Medicine, Allergy & Immunology and Clinical Genetics with special expertise in interstitial lung diseases and pulmonary fibrosis. Dr. Steele’s present research includes the investigation of inherited genetic factors that play a role in the development of familial pulmonary fibrosis and in identifying a group of genes that predispose individuals to develop pulmonary fibrosis.

Every Breath Counts was produced by Summer Productions in collaboration with the Pulmonary Fibrosis Foundation and Coalition for Pulmonary Fibrosis. Financial support and other expertise for Every Breath Counts was provided by Boehringer Ingelheim.

16 Local Businesses To Participate in “The Second Wind Foundation For Pulmonary Fibrosis Awareness” Week

Auburn, NH — Local businesses in Auburn and Manchester will support the Second Wind Foundation For Pulmonary Fibrosis by Participating in “The Second Wind Foundation For Pulmonary Fibrosis Awareness” week starting on May 10th – 17th.  Businesses will sell paper doves and display them for the week.  The annual charity fundraiser brings in much needed funds to help support families suffering from Pulmonary Fibrosis and to fund research for a cure.

What: “The Second Wind Foundation For Pulmonary Fibrosis Awareness” Week

When: May 10- May 17 

Contact: If a business would like to participate they may contact Ron Geoffroy at Info@SecondWindForPF.com.

Pulmonary Fibrosis is a rare lung disease that creates scar tissue inside the lungs, making it harder and harder to breath. Right now there is no cure for Pulmonary Fibrosis, and thanks to donations from the Second Wind Foundation, new research is helping to find a cure.  Pulmonary Fibrosis affects 500,000 people in the US.  Nearly 40,000 people will loose their battle with Pulmonary Fibrosis this year.

Ron and Marylou Geoffroy started the Second Wind Foundation, after Marylou was diagnosed with Pulmonary Fibrosis. They started the foundation to help raise awareness to a relatively unknown disease, and to help raise money for research.

“Our hope is that walls of these local shops will be covered with doves, showing strong support for those who suffer from Pulmonary Fibrosis,” said Ron Geoffroy President of the Second Wind Foundation for Pulmonary Fibrosis.  “Raising awareness to this rare and debilitating disease is one of the Second Wind Foundation’s primary goals.”

Last year the Second Wind Foundation for Pulmonary Fibrosis donated thousands of dollars to the Massachusetts General Hospital Tager Laboratories who are conducting research for find a cure for Pulmonary Fibrosis.

Below is a list of local shops participating in this years “Second Wind Foundation For Pulmonary Fibrosis Awareness” week:

MacPherson Hair Salon                    7 Raymond Rd.                      Auburn

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Auburn Supermarket                       6 Chester Rd                          Auburn

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Luoko’mammas                                 15 Chester Rd                                   Auburn

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Turnpike Pizza                                  903 Londonderry Tpke        Auburn

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Acme Glass                                         87 Priscilla Lane                    Auburn

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Hair Game                                          425 Candia Rd                      Manchester

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Zoey’s Pizza & Calzones                    2160 Candia Road                Manchester

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Sandy’s Variety                                 2281 Candia Rd                    Manchester

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Lakeside Lanes                                  2171 Candia Rd                    Manchester

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MoeJoe’s Faimily Restaurant           2175 Candia Rd                    Manchester

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Granite State Collision                      71 Sinclair Ave.                      Manchester

D’s Hair Design                                  747 Hooksett Road               Auburn

Manchester Auto Glass                     1225 Hanover St                   Manchester

Candia Auto Repair                           220 Candia Rd                      Manchester

Revive salon and spa                          1 1/2 E Broadway                Derry

Namaste Montessori School             535 Mast Rd                          Goffstown

 

# # #

 The Second Wind Foundation for Pulmonary Fibrosis is a 501C3 non-profit charitable organization that helps to raise awareness, provide funding for research, and help families who suffer from Pulmonary Fibrosis. More information about the Second Wind Foundation and Pulmonary Fibrosis can be found on our website, http://secondwindforpf.com.  Tax deductible donations can be made at http://secondwindforpf.com/about/make-a-donation/

 

Rainbow Of Hope (A Poem By Author Stacey Yount 2009)

RainbowRainbow of Hope

Author:  Stacey Yount 2009

I sit staring out my window again
Stuck in this room
By an illness that won’t let me free
I look out at the rain
And feel
Blue with sadness for
All that was, is and never will be
Red with frustration and anger
Hating the pain and endless days
Green with envy
Because everyone’s life has moved on
While I am stopped here since that fateful day
Yellow with fear
That this is the way
It will always be
Then he calls
Come look out this window
And I see
A rainbow stretched across the sky
The colors transform
Into Hope

*          *          *         *           *           *

Participate in our Dove Event – Donate and “Give the Gift of Breath”!  Thank you.

Posted by Karen Casey

Hospice and Access to Medications – New CMS Guidance

Berkshires Support Group

Hospice and Access to Medications – New CMS Guidance
by John Dominguez 
IPF Support Group

On March 10, 2014, the Centers for Medicare & Medicaid Services (CMS) issued a memorandum to Part D Plan Sponsors and Medicare Hospice Providers entitled, “Part D Payment for Drugs for Beneficiaries Enrolled in Hospice – Final 2014 Guidance” (Guidance).  The Guidance identifies a billing problem related to medications after Medicare beneficiaries elect hospice, and designs a solution effective May 1, 2014.  The Guidance also describes the solution’s “implications for beneficiaries.”  ThisAlert will discuss the problem and solution.  A second Alert will discuss the identified implications for beneficiaries.

Summary

Medications that should be covered by the Medicare Hospice Benefit are sometimes paid for by the insurance companies that administer Medicare Part D plans.  To prevent this from happening, effective May 1, 2014, all prescribed medications for hospice patients billed to Medicare Part D will initially be denied coverage.  To get their medications, hospice patients will have to initiate and ultimately succeed at a Medicare appeal.  In other words, to protect insurance companies, dying patients will have to jump through hoops to get medically necessary, potentially life-sustaining medications.

Hospice

Hospice is care for the dying.  It is palliative care, which means it is patient and family-centered, and optimizes quality of life by anticipating, preventing, and treating suffering.  Good hospice care addresses physical, intellectual, emotional, social and spiritual needs, and facilitates autonomy.

Since 1983 Medicare has paid for hospice care when beneficiaries are certified as having a life expectancy of 6 months or less.  Medicare providers are paid a per diem that is designed to cover all services necessary for the palliation and management of the terminal illness and related conditions.  Hospice coverage includes the cost of medications related to the terminal illness.  When Medicare beneficiaries elect the hospice benefit, they forego Medicare coverage for curative treatment related to their terminal illness, but are still eligible for Medicare coverage for all other covered care.  For instance, if a Medicare beneficiary with liver cancer elects the hospice benefit, Medicare will no longer pay for treatment to cure the cancer, but it will continue to pay for care related to other illnesses like diabetes and hypertension.

Medicare Part D

In 2006, Medicare began paying for prescription medications.  Rather than simply doing this through traditional Medicare, Congress added a new “part” to Medicare – Medicare Part D.  In an unnecessarily complex system, the prescription drug benefit is offered by an array of insurance companies, each offering one or multiple plans with a dizzying amount of formularies for beneficiaries to choose from.  Each year, Medicare beneficiaries are expected to review their medication needs and to choose the plan that offers the best formulary and the best price.

Problem

medicareThe CMS Guidance indicates that Part D Plans might inappropriately pay for Hospice medications.  This is a real possibility, but CMS’s solution to the problem inappropriately burdens the dying and their families.

When the Prescription drug benefit was added to Medicare, very little thought was given to how it would interface with the hospice benefit.  Guidance issued at the time appropriately indicated that hospice providers should pay for palliative medications related to the terminal illness and that the insurance companies that offered the Part D plans should pay for all other medications.  However, no process was created to inform the insurance companies when Medicare beneficiaries elected hospice.

The CMS Guidance raises the possibility that, after Medicare beneficiaries elect hospice, the insurance companies may continue to pay for medications that should properly be covered by the hospice benefit.   For instance, prior to electing hospice, a beneficiary may need and receive medications for pain and nausea related to cancer.   These medications would be covered by her Part D plan.  If the beneficiary elects the Hospice Benefit because of the cancer, the hospice provider becomes responsible for covering the pain and nausea medications.  However, if a family member brings the prescription to a local pharmacy, the pharmacy will bill the insurance company administering the beneficiary’s Part D plan.  Because the insurance company does not know the beneficiary elected hospice, it will probably pay for the prescription medications.

To solve this problem, CMS designed a process whereby Part D plans can find out via the Medicare Beneficiary Database when a beneficiary elects hospice.  CMS then advises them that, “drugs covered under Part D for hospice beneficiaries will be unusual and exceptional circumstances.”  The Guidance then directs the insurance companies to “place beneficiary-level prior authorization (PA) requirements on all drugs for beneficiaries who have elected hospice to determine whether the drugs are coverable under Part D.” (emphasis in original)

The new Guidance means that whenever the hospice patient or her family tries to fill a prescription at the pharmacy, the pharmacy will get a message stating, “Hospice Provider-Request Prior Authorization for Part D Drug Unrelated to the Terminal Illness or Related  Conditions.”  Then it will be the duty of the pharmacy to contact the beneficiary or prescriber to determine whether the medication is related to the terminal illness.  If the medication is related to the terminal illness, the pharmacy will bill the hospice for the cost of the medication.  If the medication is not related to the terminal illness, the pharmacy cannot fill the prescription.  Instead, the pharmacy will provide the standardized pharmacy notice with appeal rights (i.e., Prescription Drug Coverage and Your Rights – Form CMS- 10147).

So, even when it is determined that the medication is not related to the terminal illness, to get her medications the beneficiary or “appointed representative” will have to contact the insurance company and request an appeal.  If this is done, the insurance company will contact the prescriber and ask him or her to complete the prior authorization form and submit it by fax or mail.  CMS imagines that if the prescriber is unwilling to complete the prior authorization paperwork, the insurance company will call the hospice and ask it to explain whether the medication is related to the terminal illness.

If the insurance company is satisfied that the medication is not related to the terminal illness, CMS expects the Part D plan to contact the pharmacy and instruct the pharmacist regarding how to override the denial.  CMS indicates that the decision should be made within 72 hours, but that the adjudication timeframe may be extended “pending receipt of the necessary information” or “based on the facts and circumstances of the case.”

This process may prevent insurance companies from bearing the cost of hospice medications, but it does this by burdening the hospice patient and his family.  For instance:

Mr. B. was 83 years old.  He was quite healthy and independent, living an active life with the help of a few medications, including one to control his blood pressure.  After experiencing some uncomfortable indigestion, he went to his physician.  Sadly, he was diagnosed with metastatic pancreatic cancer and given a limited life expectancy.  He elected the hospice benefit.  Under this new protocol, when his wife goes to the pharmacy to re-fill his life sustaining blood pressure medication to prevent a stroke, the request for payment will be automatically denied.  This is despite the fact that Mr. B. will be at high risk for a stroke without the medication.  Mrs. B. will have to contact the insurance company to appeal the denial.  The insurance company may not speak to Mrs. B. because she is not an “appointed representative.”  Mr. B. may not feel well enough to call or to complete the required paperwork.  If Mr. B is up to negotiating the appeal process, the insurance company should then call Mr. B.’s doctor who may or may not agree to fill out the pre-authorization form.  If Mr. B’s doctor does not fill out the form, the insurance company may or may not contact the hospice provider.  In the meantime, due to a protocol designed to save the insurance company money, Mr. B. may have a stroke.

Conclusion

This burden-shifting to the dying patient is illogical and immoral.

CMS has erred in assuming that most hospice patients will not continue to have Part D covered medications.  Most older Americans are on medications for chronic conditions, and some of these medications, like Mr. B’s hypertension medication, are very important as they prevent premature death or devastating injury.  Further, CMS has erred in designing a system further burdening the dying and their families.  The insurance companies that administer Medicare Part D plans can easily design a system to retroactively review medications covered for hospice patients.  If appropriate, the Part D plans can seek reimbursement from hospice providers.  Such a process is already imagined in the Guidance for situations when insurance companies pay for hospice medications before determining the beneficiary has elected hospice.

Insurance companies, though not legally responsible, should continue to bear the risk of initially paying for medications for hospice patients.  In weighing the financial concerns of insurance companies against the legal rights of dying Medicare beneficiaries, clearly the rights of hospice patients and their families should prevail.

 

Reference:

Center for Medicare Advocacy’s Alerts http://www.medicareadvocacy.org/articles/weekly-update-archive/

 

The Second Wind Foundation To Sell “Doves” At Local Shops To Bring Awareness To Pulmonary Fibrosis

SWDove CropDuring the week of May 10th -17th, the Second Wind Foundation for Pulmonary Fibrosis will be working with businesses in the Manchester and Auburn area to bring awareness to the rare and debilitating disease known as Pulmonary Fibrosis.

This is the second annual “Second Wind for Pulmonary Fibrosis Awareness Week,” and we hope to double our fundraising efforts from last years event.

Pulmonary Fibrosis is a rare lung disease that creates scar tissue inside the lungs, making it harder and harder to breath.  One of our main goals of the Second Wind Foundation is to education the public about this disease by raising money to help with awareness, research and support families suffering from Pulmonary Fibrosis.

Local businesses will be selling paper “Doves” for $1.00 and then will post your name and your message of support for everyone to see.   Our hope is that walls of these local shops will be covered with doves, showing strong support for those who suffer from Pulmonary Fibrosis.

Local shops and restaurants will be posting the below flyer on their door.  (If you have a business in Manchester’s Ward 6 or in Auburn and would like to take part in our event, contact Ron Geoffroy at Info@SecondWindforPF.com.)

Look for these signs and help support the Second Wind Foundation for Pulmonary Fibrosis.    We will be updating this post as local businesses agree to take part in the event.

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Please help us in finding a cure for Pulmonary Fibrosis by purchasing a dove any time you enter these businesses

 Businesses Currently participating on the Dove Event:

Zoey’s Pizza – 2160 Candia Rd., Manchester

MacPherson Hair Salon – 7 Raymond Rd., Auburn

D’s Hair Design – 747 Hooksett Rd., Auburn

Louko’mammas – 15 Chester Rd., Auburn

Candia Rd. Auto – 220 Candia Rd., Manchester.

Granite State Collision – 71 Sinclair Ave., Manchester

Revive Salon – 1.5 East Broadway Rd., Derry

Namaste School – 535 Mast Rd., Goffstown

Acme Glass – 87 Priscilla Lane, Auburn

Hair Game, 425 Candia Rd. Manchester.

Auburn Supermarket, 6 Chester Rd, Auburn

Turnpike Pizza,  903 Londonderry Turnpike, Auburn

Manchester Auto Glass, 1224 Hanover St., Manchester

Sandy’s Variety, 2281 Candia Rd., Manchester

Lakeside Lanes, 2171 Candia Rd., Manchester