A library of past information.
Men’s Retreat 2015
January 9–11, 2015
West Yellowstone, Montana
Please contact Brad if you are interested in attending and/or planning our Men’s Retreat. Our retreat includes a snowmobile trip into Yellowstone National Park. All of your expenses to attend can be covered by RMHBDA, including fuel assistance. Please RSVP to Brad at 406.586.4050 or email@example.com.
Save the Date!
2014 Walk for Hemophilia
Saturday, September 6, 2014
Zoo Montana, 2100 South Shiloh Road, Billings, MT 59106
Registration 8:00 am
3k & 1.5k Walk 9:00 am
Contact: Hemophilia Walk Event Manager 406.586.4050
To be eligible for a special drawing prize, register as a Team Captain by July 30!
Visit www.hemophilia.org/walk to create or join a walk team; click on the “MT” link, then click on your preference: “Register,” “Donate,” “Create a Team,” or “Join a Team.” We’ve raised over $14,000 as of June 30th!
Can’t make it, we understand! But you can still participate and contribute by hosting a “mini walk,” BBQ, small party, or event in your community, or search out “virtual walkers” who can’t attend as well! Tell them they can, “sleep in, save gas, get a t-shirt,” and make a big difference for your family and families throughout Montana and Wyoming. Also, call Brad Benne to find out how you can help! Your support is appreciated, this is your organization!
Rocky Mountain Hemophilia & Bleeding Disorders Association announces the 3rd Annual Montana and Wyoming Walk for Hemophilia, benefitting those suffering from bleeding disorders in the Montana and Wyoming community. We are hosting a walk in Billings, Montana on September 6, 2014, registration begins at 8:00 am at Zoo Montana. Team and Personal Fundraisers compete for the Top Team and Personal Fundraiser Awards in the state from Montana and Wyoming. All proceeds from these fundraising efforts will benefit RMHBDA.
|Top Fundraisers (as of June 30, 2014)
||Top Teams (as of June 30, 2014)
Visit www.hemophilia.org/walk for more information and to register and raise critical funds for our chapter of the National Hemophilia Foundation.
Using social media, online fundraising pages, and more, RMHBDA is leveraging the power of the web to raise funds. Visit www.facebook.com/rmhbda, and become a fan today!
Rocky Mountain Hemophilia & Bleeding Disorders Association, a chapter of the National Hemophilia Foundation, is a 501(c)(3) non-profit organization incorporated in 2000 to address the needs of the bleeding disorder community in Montana and Wyoming. RMHBDA’s mission is to improve the quality of care and life for persons with inherited bleeding disorders, including hemophilia and von Willebrand Disease through education, peer support, and resource and referral.
Contact Brad Benne at 406.586.4050 or firstname.lastname@example.org for fundraising support, questions, and comments.
MT & WY Hemophilia Walk Kickoff & Baxter True Identity Seminars
You Are Invited to the Kickoff Celebration/Baxter Facts True Identity Education Seminars.
We will have food and quality education provided by Baxter. And of course, loads of helpful information on how to make your walk team make the last two weeks of fundraising really count! We can’t wait for you to join us.
Billings August 12 | Bozeman August 13 | Helena August 14 | Kalispell August 15
Please RSVP: Brad Benne, email@example.com or 406.586.4050
The True Identity program is an interactive, educational series that covers a wide variety of topics affecting the hemophilia community. True Identity seminars bring together hemophilia experts, caregivers, and those living with hemophilia to address issues and questions in an open, conversational setting.
Family Camp 2014
Our annual Family Camp would not be possible without our generous program funders: Colburn Keenan Foundation, CVS Caremark, Bayer Baxter, Biogen Idec, CSL Behring, Grifols, Novo Nordisk, Pfizer Hemophilia, and Walgreens Infusion Services.
RMHBDA Family Camp was held June 20–22, 2014 at Camp on the Boulder near McLeod, Montana at the base of the Beartooth Mountains. Eighteen families attended that included 29 youth and 36 adults. Thank you to all who attended.
Adults and youth ages 11–17 participated in a powerfully engaging program that is designed to inspire adults and kids to believe in their own ability to function at their optimal level and challenge them to grow. Presented by Pat Torrey, and made possible by Pfizer Hemophilia.
Children ages 2–10 enjoyed numerous arts and crafts projects, games, and building forts in the woods, supported by wonderful counselors from the Camp on the Boulder staff.
Thank you to the camp committee and our chapter volunteers: Ryan Smith, Billy Duckworth, Kent Pointer, Lisa Glass, Sue Riter, and Dr. Marilyn Manco-Johnson. Your good work and valuable time made family camp a wonderful experience for everyone!
Education Weekend 2014
A special “Thank you” to our HTC for co-sponsoring our Education Weekend! Thank you to our generous program funders: Accredo Health, Inc., Bayer Healthcare, Baxter Healthcare, Biogen Idec Hemophilia, CSL Behring, CVS Caremark, HF Healthcare, Kedrion USA, Novo Nordisk, Pfizer Hemophilia, and Walgreen Infusion Services.
Education Weekend was held April 4–6, 2014 in Helena with 19 families attending (23 youth and 30 adults). Educational sessions included: infusion session, industry/product exhibits, “My Life Our Future,” living a healthier lifestyle, partnering with your school, and healthcare reform. All members visited our exhibitors to learn more about each company and their products.
RMHBDA welcomed three extraordinary additions to our Board of Directors: Sean Jeffrey of Missoula, Van Savage of Malta, and Lisa Glass-Ferriter of Helena (all in Montana). We are truly grateful to Sean, Van, and Lisa for volunteering their time to serve our community!
Special thanks to Lisa Maxwell, Lisa Glass-Ferriter, Van Savage, and Ryan Carter for assisting with the organization of the event!
First RMHBDA Scholarships Awarded
Congratulations to the first RMHBDA scholarship recipients Jessica Amende and Lane Maxwell. They each received $1,000 from RMHBDA to pursue their career and educational aspirations. On behalf of the RMHBDA Board of Directors and the RMHBDA family, we wish Jessica and Lane great success and happiness as they pursue their goals.
Through the RMHBDA, we recognize the many individuals including the board of directors, governance bodies, donors, sponsors, and each and every member as a reason to exist as well as the reason we do exist. From the generosity of many and due to the needs of our members, it has been a long time goal for us to be able to offer scholarships to our membership. We believe that knowledge and understanding is the key to the future for the bleeding disorders community. We also understand that the generous service and commitment of our members is the reason for the success of RMHBDA. With this scholarship program, we want to recognize those individuals who have shown commitment to the bleeding disorders community through their actions. We look to all those within our reach: those with bleeding disorders, parents, siblings, etc. We want to reward those who show courage, understanding, and a commitment to the betterment of the lives of those affected. We wish all students the very best of luck in their endeavors. Stayed tuned for details regarding the RMHBDA scholarship application in the spring of 2015.
Save the Date!
Mile High Colorado Camp
July 20–25, 2014
Camp forms will be available mid-March! Stay Tuned!
When and Where?
Who Should Attend?
Mile High Colorado Camp is for ages 7–18. We accept 6-year-olds on a case by case basis. Programming is determined by age. Check back with us soon to learn about the different programs we offer at camp!
What does it cost?
Each family is required to pay a non-refundable $75.00 deposit. The remainder of the camp cost, approximately $1000 per camper, is underwritten by other sources. If you have questions or need additional information, please call Brad Benne at 406.600.2554. Scholarship forms are available. Scholarships will be granted on an individual basis.
Leadership Pre-Camp Retreat
July 18-20, 2014
Save the Date!
Family Camp 2014
June 20–22, 2014
Camp on the Boulder, McLeod, MT
For more information, visit www.campontheboulder.org
Each summer, RMHBDA invites affected families living in Montana and Wyoming to attend a weekend retreat. The weekend is packed full of education, bonding, and fun!
2014 Education Weekend
April 4–6, 2014
Registration Deadline: March 14, 2014!
Rocky Mountain Hemophilia & Blood Disorders Association
University of Colorado Hemophilia & Thrombosis Center
Best Western Premier Helena Great Northern Hotel
835 Great Northern Boulevard, Helena, MT
It’s time for the 10th Annual Education Weekend for people affected by bleeding disorders in Montana and Wyoming! You and your family are invited for a weekend of informative sessions, youth programming for all ages, and an opportunity to connect with others dealing with similar challenges. This education weekend and annual meeting of RMHBDA is designed to bring you education, up-to-date information about life with a bleeding disorder, and connect you with other families in our two-state area.
Don’t miss this opportunity with your Chapter, Industries, HTC Staff, Accredited Speakers, and your family. It will be a special and rewarding weekend for all.
Need assistance to attend Education Weekend?
RMHBDA will provide Patient Assistance Applications in all registration packets. Please save all gas, food, and travel expense receipts!
Please contact Brad Benne, Executive Director at 406.586.4050 with any questions.
RMHBDA Education Scholarship
For Undergraduate Students and Families Affected by Bleeding Disorder
Having an association with the National Hemophilia Foundation, we gain support from the NHF, national and local corporate partners, and local individuals. Our mission is to provide ongoing support through education, family camp and financial means as well as other specific programs to meet the needs of the individuals we serve.
Through the RMHBDA, we recognize the many individuals including the board of directors, governance bodies, donors, sponsors and each and every member as a reason to exist as well as the reason we do exist. Due to the generosity of many and the needs of our members it has been a long time goal to be able to offer scholarships to our membership.
We believe that knowledge and understanding is the key to the future for the bleeding disorders community. We also understand that generous service and commitment of our members is the reason for the success of RMHBDA. With this scholarship we want to recognize those individuals who have shown commitment to the bleeding disorders community through their actions. We look to all those within our reach; those with bleeding disorders, parents, siblings, etc. We want to reward those who show courage, understanding and a commitment to the betterment of the lives of those affected. We wish all students the very best of luck in their endeavors.
The PDF file Includes eligibility information and application
New Domain Name: rmhbda.org
Less Typing! More Access!
We're happy to introduce our new domain name, RMHBDA.ORG, which is shorter and fully honors our organization name and entire mission. Don't worry, we'll be keeping rockymountainhemophilia.org functional should you forget the new one, and to avoid any possible confusion by having another organization use it. We've also purchased rmhbda.com to ensure there's no confusion with any other organization. Whichever domain name you type, you'll arrive at rmhbda.org.
Our new hosting company provides new tools for communicating and working together. Watch for those over the next several months.
We also have a new email address: firstname.lastname@example.org which provides a professional presentation and reinforces the use of our domain name.
Blood Brotherhood Men’s Retreat
Sponsored by Hemophilia Federation of America, Rocky Mountain Hemophilia, and Snake River Hemophilia Association
February 21–23, 2014
Chico Hot Springs, Pray, MT
Our men’s retreat will include education, a dogsled trip in the Absaroka Mountains, relaxing in the hot springs, amazing food, and a quality bonding experience.
All of your expenses at Chico Hot Springs will be covered, we can also offer travel assistance.
We need help organizing. Please contact Brad at 406.586.4050 if you are interested in serving on the Blood Brotherhood planning committee or if you would like to RSVP for this event. This is YOUR organization!
Ladies Only: RMHBDA’s “Women’s Escape”
We need to organize! Please contact Brad if you are interested in attending and planning our program. Ladies, please leave the boys at home.
Our Women’s Escape committee includes: Jessica Amende, Christy Savage, Heidi Hart, Jane Robertson, and Sara Jestrab. Thank you for your time and support in planning this event. All of your expenses at Chico Hot Springs will be covered. If you need fuel assistance, please talk with Brad.
Please RSVP: Brad Benne, email@example.com or (406) 586-4050
2nd Annual Walk for Hemophilia A Major Success!
October 9, 2013 — We couldn’t have asked for a nicer day on September 7, 2013. We had over 150 walkers at our Second Annual Walk for Hemophilia at Bogert Park in Bozeman, Montana. Good natured and generous supporters helped raise over $44,000 and awareness at our second ever walk. I want to send a very gracious thank you to our volunteers, team captains, and walkers for making our walk a tremendous success. We are so grateful for your participation.
We would also like to extend a very gracious thank you to our local and corporate sponsors: St. Vincent’s Healthcare, Barnard Construction, Baxter, Bayer, Biogen Idec, Bozeman Deaconess Health Services, CSL Behring, Fifth Street Design, First Interstate Bank, Grifols, HF Healthcare, Insty Prints, Fuller Family Medicine, Walmart, Novo Nordisk, Pfizer, CVS Caremark, and Restore RX.
Check our Facebook page for wonderful photos from our walk.
2nd Annual MT & WY Walk for Hemophilia!
September 7, 2013
Bogert Park, Bozeman
Registration 9 am; Walk 10 am
To be eligible for a special drawing prize, register as a Team Captain by July 15!
July 22, 2013 — Visit www.hemophilia.org/walk to create or join a walk team; click on the “MT” link, then click on your preference: “Register,” “Donate,” “Create a team,” or “Join a Team.” We’ve raised over $14,000 in corporate sponsorship as of June 27!
Can’t make it? We understand! But you can still participate and contribute by hosting a “mini walk,” BBQ, small party, or event in your community, or search out “virtual walkers” who can’t attend as well! Tell them they can, “sleep in, save gas, get a t-shirt,” and make a big difference for your family and families throughout Montana and Wyoming.
Also, call Brad Benne to find out how you can help! Your support is appreciated, this is your organization!
MT & WY Hemophilia Walk Kickoff!
You Are Invited to the Kickoff Celebration/Baxter Facts First Bleeding Disorders Education Seminars
July 22, 2013 — We will have food and quality education provided by Baxter. And of course, loads of helpful information on how to make your walk team make the last two weeks of fundraising really count! We can’t wait for you to join us.
|Billings Aug 19||Bozeman Aug 20||Helena Aug 21||Missoula Aug 22|
|Please RSVP: Brad Benne, firstname.lastname@example.org or 406.586.4050|
Baxter Facts First Bleeding Disorders Education Seminar:
Managing Pain Understanding How To Assess & Manage Pain Effectively
The Facts First program is an interactive, educational series that covers a wide variety of topics affecting the hemophilia community. Facts First seminars bring together hemophilia experts, caregivers, and those living with hemophilia to address issues and questions in an open, conversational setting.
Mile High Colorado Camp
Save The Date! July 14–19, 2013
Leadership Pre-Camp Retreat July 12–14, 2013
Forms will be available in mid-March 2013! Stay Tuned!
The Hemophilia and Thrombosis Center (HTC) is proud to once again sponsor the summer camp program at Rocky Mountain Village.
Who Should Attend?
Children with hemophilia or other bleeding disorders Siblings of the above groups Mile High Colorado Camp is for ages 7–18. We accept 6-year-olds on a case by case basis. Programming is determined by age. Check back with us to learn about the different programs we offer at camp!
Why Attend Camp?
The purpose of camp is to learn about bleeding disorders, develop skills and have fun! Campers will have the opportunity to meet new friends and participate in a variety of traditional camp activities. As always, we have included educational components with the goal of encouraging self-confidence and independence. Many campers have learned to perform self-infusion, experienced teamwork, and discovered new skills during the week of camp. Staff at the Hemophilia & Thrombosis Center(HTC) and Rocky Mountain Village wants this to be a wonderful experience that creates a wealth of fond memories for your camper.
What Does It Cost?
Each family is required to pay a non-refundable $75.00 deposit. The remainder of the camp cost, approximately $1000.00 per camper, is underwritten by other sources. If you have questions or need additional information, please call Brad Benne at 406.600.2554. Scholarship forms are available. Scholarships will be granted on an individual basis.
Each summer, RMHBDA invites affected families living in Montana and Wyoming to attend a weekend retreat. The weekend is packed full of education, bonding, and fun!
Family Camp 2013
June 14–16, 2013
Luccock Park Camp
For more information, visit www.luccock.org
For the 65 parents and teens, we will have teambuilding programming led by our guest, hemophilia leadership expert, Pat Torrey and some time to relax with other families. This is a great opportunity to learn from and share experiences with one another.
We also have many great activities planned for our campers including arts & crafts projects, field games, and educational sessions for children with bleeding disorders and their siblings. Infusion classes will be offered from HTC RN, Sue Geraghty.
Call Brad with any questions at 406.586.4050
We need help organizing!
If you are interested in serving on the Education Weekend committee, please contact Brad at 406.600.2554.
This is your organization!
New! Donate to RMHBDA using PayPal
February 25, 2013 — In response to requests, we've established a PayPal account for those who wish to support our work with donations. It's secure and ready to use now! Just visit our Donate/Join page!
RMHBDA Education Weekend 2013 Recap
A special "Thank you" to our HTC for co-sponsoring our Education Weekend!
Thank you to our generous program funders:
|Accredo Health Inc
|Biogen Idec Hemophilia
Kedrion USA Novo Nordisk
Walgreen Infusion Services
RMHBDA Education Weekend was held February 22–24 in Bozeman, Montana with 22 families attending — 32 youth and 40 adults. Educational sessions during Education Weekend included: infusion session, Von Willebrand disease, industry/product presentations, inhibitors, financial advice, how to be a good consumer, healthcare reform and overcoming challenges in dealing with bleeding disorders. All chapter members spent time visiting our exhibitors as they learned more about each company and their products.
RMHBDA welcomed three extraordinary additions to our Board of Directors: Sara Jestrab of Bozeman, Ben Kuss of Bozeman and Brian Schulz of Billings. We are truly grateful to Sara, Ben and Brian for volunteering their time to serve our community!
Everyone enjoyed the chapter trip to the bowling alley. Children enjoyed field trips to the Museum of the Rockies and Spire Climbing Center. Special thanks to Lisa Maxwell and Heidi Hart for assisting with the organization of the event!
A Courageous Journey
By Brad Benne, Executive Director
Mark Twain once wrote, “Courage is resistance to fear, mastery of fear, not absence of fear.” That quote best describes our chapter and how we approached our first walk along with the many other obstacles we face relating to bleeding disorders here in Montana and Wyoming. Before I was involved in a leadership position with our chapter, our Board of Directors and previous Executive Director made a brave decision to participate in the NHF Walk program.
Although each chapter has unique challenges, our greatest challenge begins with location. We encompass all of Montana and Wyoming and many of our members travel great distances to receive adequate medical care and to attend chapter events. For many of us, our closest Hemophilia Treatment Center is in Aurora, Colorado. As you can imagine, due to the lack of access to quality care, families here quickly become a very close knit group with strong voices of support and advocacy for one another. Fortunately, our largest obstacle also brings us closer together.
As a chapter, we experienced some resistance and doubts as we moved forward with planning our walk. We knew very little about organizing a walk, and just like any new endeavor for any organization, big or small, the idea of pulling off such an event successfully, frightened us. Considerable effort had been put into planning previous fundraisers, but results never yielded sustaining results to support and maintain our chapter’s financial stability. At one point, our chapter even waivered and canceled our walk seven months before our event. But after our annual meeting, we rallied and restored plans for our first walk because we knew the future of our chapter depended on the walk.
Raising $50,000 and rallying a hundred walkers was a daunting and overwhelming goal for our organization. The support and guidance from NHF staff and other hemophilia chapters who willingly shared their ideas and experiences with us helped our chapter create a plan. With that said, our biggest challenge remained because we are by far one of the smallest and logistically challenged chapters to participate in the walk program. Although we followed the recommendations of the NHF staff, in some cases we had to adjust our game plan. For example, we combined our “Kickoff” and “Call to Action” meetings and included an educational session and free dinner.
We were thrilled to have over a hundred walkers and raise $27,500 as a chapter in our first walk! The walk also helped our chapter by making bleeding disorders more visible in our community. Hopefully, as the walk grows we will continue to spread awareness to every corner of Montana and Wyoming. We also raised nearly $10,000 in corporate donations, thanks to generous support from the pharmaceutical industry. We did step outside the box by raising $3,000 of sponsorship from local businesses not directly related to the bleeding disorder community. In addition, we were fortunate to have Sara Jestrab, a Montana State University student and NYLI participant, serve as a summer intern. Sara helped us spread the word of bleeding disorders and our walk in local newspapers, radio public service announcements, and Facebook. In addition to a stunningly beautiful fall day in Montana, with spectacular mountain scenery, we created a festive event by incorporated live music, face painting, super heroes, a duck race, and lunch for all walkers and volunteers!
Although we still have a lot of work to do as a chapter, and the year was full of numerous challenges, the rewards were much greater! Through media exposure, we were able to spread awareness of bleeding disorders in our communities. Even the majority of our volunteers and sponsors knew very little about bleeding disorders. The money we raised has created financial stability to expand our programming and replenish our financial assistance program. Our chapter members have always been highly involved with our programs, but the walk created a renewed sense of pride and enthusiasm among our chapter members and volunteers. The energy and hard work our chapter poured into making our first walk a huge success was a defining moment for our chapter - a moment as a member and the director that I am deeply proud to have played a role.
We are excited for our 2nd Annual Walk on September 7, 2013 in Bozeman, Montana. We believe our walk will continue to grow in spreading awareness and raising money to sustain and improve our chapter for years to come.Sincerely,
151 Patient Groups Send Letter
to HHS Secretary on Essential Health Benefits Proposal
December 18, 2012 —
The Honorable Kathleen Sebelius
Secretary of Health and Human Services
The Hubert H. Humphrey Building
200 Independence Avenue, S.W.
Washington, D.C. 20201
Re: Comments on Essential Health Benefits Proposed Rule
Dear Secretary Sebelius:
We, the undersigned, are health advocacy organizations representing millions of patients and their families who are committed to implementation of the Affordable Care Act (ACA). The manner in which the essential health benefits (EHB) are defined will directly impact how well health coverage works or does not work for approximately 23 million patients expected to be enrolled in the exchanges and the millions of enrollees in non-grandfathered individual and small group plans outside of the exchanges. We are writing to thank you for acknowledging our earlier concerns with the December 2011 EHB bulletin, and to comment on the proposed EHB rule issued on November 26, 2012. Specifically, we recognize the changes regarding prescription drug coverage, and now ask you to further consider our views as you finalize the rule in order to provide all patients with meaningful and affordable care and treatment.
Prescription Drug Coverage
We are pleased that you recognize the “one drug per class” minimum requirement was not workable for patients, particularly for those with serious complex chronic health conditions. The proposed language in the rule, “at least the greater of: 1) one drug in every category and class; or 2) the same number of drugs in each category and class as the EHB-benchmark plan” provides patients with greater access to medications. Unfortunately, it will inevitably fail to meet many patients’ needs and presents additional difficulties. Nevertheless, in the final rule, we urge you not to go below the proposed standard.
Meeting a Target Number of Drugs: Patients do not respond to a specific number of drugs but rather to specific drugs that best meet their needs as prescribed by their physician. The proposed rule merely requires plans to meet a target number of drugs within a specific class without regard to which drugs are covered. Under the standard described in the proposed rule, plans can choose not to include certain drugs that may have unique and important therapeutic advantages in terms of safety and efficacy, and still meet the requirements of EHB coverage just as long as they include a minimum number of drugs in the class. A system must be in place to review the adequacy and quality of each plan formulary; the quantity of medications must not be the only measure. EHB plans could exclude more effective therapies in some classes, which would violate the patient protections and non-discrimination policies in the law and would not be consistent with “typical” employer plans. A robust formulary is necessary because not all patients respond to medicines in the same way. Physicians may need to change medicines over the course of an illness, patients may become resistant to or suffer adverse side-effects from a particular drug, some may need more than one medication from the same class at the same time, and patients taking multiple medicines need alternatives to avoid harmful interactions. Patients need access to a full range of medicines. If they are not able to access appropriate medications, patients may become ill, impacting healthcare spending in the long run.
State Variation in Drug Coverage: According to analysis conducted by Avalere Health, there exists a wide variation in the total number of drugs included in the state selected benchmark plans. While some states have over 1,000 drugs on their formulary, others have fewer than half of that amount. Although simply judging the quality of a formulary by the number of drugs covered is a poor measure of its adequacy, it is troubling that we see such significant variation across states. This perpetuates the fragmented system of health care in the country. To meet patients’ needs, we suggest that plans be required to cover all or substantially all drugs in each class.
Plan for New Drugs: The proposed rule does not discuss how plans must address new drugs that come onto the market during the course of a plan year. The standard described in the proposed rule appears to tie the EHB formulary requirements for 2014 and 2015 to the number of drugs offered by the benchmark plan in 2012 and does not include any requirements for plans to cover drugs approved after 2012. We would suggest that plans be required to update their formularies using methods similar to Medicare Part D and the private insurance market. For example, Part D requires that independent Pharmacy and Therapeutic (P&T) Committees make decisions on coverage of new products within 180 days of their approval. As part of the requirement to review newly approved drugs, patients in EHB plans should be able to remain on older therapies without the fear that their prescriptions will be taken off the formulary when a newer drug is added.
Drug classification system: HHS proposes to use the US Pharmacopeia (USP) system to classify the drugs in EHB formularies, but this system would require changes to be used for this purpose. The USP only updates their drug classification system every three years, which will cause delays in reflecting new medical innovations. USP also does not recognize combination products, which have been shown to improve adherence and have become the standard of care in some areas. The USP system is also very broad, which would allow plans to cover the same number of drugs in a class as the benchmark while exclude groups of drugs needed for patients with certain diagnoses. If changes are not made to the USP, we recommend that HHS consider alternative approaches.
Appeals Process for Drugs not on Formulary: While the proposed rule states that a plan “must have procedures in place that allow an enrollee to request clinically appropriate drugs not covered by the health plan,” such a process is not laid out and we are concerned the interests of patients will not be adequately protected. The proposed rule merely states that a plan has to have a process, but does not provide any standards or requirements for an appeal process. We would recommend that the procedures outlined in Medicare Part D, which calls for an expedited, timelimited process with emergency filling of prescriptions be required. Further, we believe that HHS should adopt a standard of guaranteeing access to medically necessary pharmaceuticals through the appeals process.
Patient Cost-sharing: In the development of health plans, it is also imperative that patient costsharing be limited so that patients can afford access to lifesaving medications and other health care services. We are concerned with HHS’ proposal that patient’s out-of-pocket spending on out-of-network treatments and services would not be counted as part of a patient’s cost-sharing. We are also concerned that HHS proposed not to factor these costs into the calculation of actuarial value. This appears to be contrary to the language in the Affordable Care Act, which limits the “cost-sharing incurred under a health plan.” HHS should revise its position and specify that copayments and coinsurance on covered out-of-network services will count towards the out-of-pocket maximum. This change will be particularly important given the likelihood that health plans offering essential health benefits will use narrow provider networks. Utilization Management Techniques: It is critical that patients not be denied access to treatments through utilization management techniques such as step-therapy, prior authorizations, and quantity limits that impede quality care and treatment. Limits on these practices should be put in place along with a process for patients to appeal them. Physician Administered Medications: The proposed rule does not address the scope of prescription drugs available via the medical benefits offered as part of the EHB. The final rule should confirm that these medications will be covered through the medical benefit, as is the case in employer sponsored health plans.
According to the law, "the Secretary shall ensure that the scope of the essential health benefits … not make coverage decisions . . . that discriminate against individuals because of their . . . disability" and will "take into account the health care needs of diverse segments of the population, including . . . persons with disabilities." The proposed rule merely restates what is in the law relative to non-discrimination and provides no further guidance to the states and plans on how these requirements will be administered or enforced at the plan, state, or federal level. Frequently, plans place drugs on specialty tiers or deny patients certain necessary treatments or services. Additionally, plan sponsors may devise or market a plan that discourages enrollment of certain patients, particularly those with chronic health needs.
The final rule must better define how the state and the federal government will assess, monitor and enforce the law’s non-discrimination measures. There needs to be rigorous methods for assuring that plan benefit designs and formularies do not result in discouraging enrollment by individuals with significant health needs. We do not feel it is sufficient to allow all monitoring to rest at the state level. The processes CMS uses in the Medicare Part D and Medicare Advantage programs has been successful and would be an appropriate model for CMS to use for EHB plans.
Access to Proper Care
The proposed rule does not address the need for patients to access quality health care nor does it set any standards of care for patients. Patients need access to a comprehensive range of health care services and providers to ensure quality care and positive health care outcomes. Many patients need access to specialist care, particularly those with chronic conditions. The final rule must allow for access to specialty care. There are tens of millions of Americans who are affected with serious chronic and/or rare diseases. For these patients, access to specialty physicians and other clinicians is essential for their diagnosis and treatment. Patients who do not have such access are at grave risk of having their condition reach crisis stages, increasing human suffering and requiring even more costly care, including hospitalization.
We thank you for your continued leadership in ensuring that more Americans will have access to health care. We realize that we are at a critical time in implementing ACA. Decisions that are made now will determine its success. On behalf of patients with many diverse chronic health conditions and disabilities, we look forward to a regulation that provides a more meaningful prescription drug benefit and a better explanation of the patient protections outlined in ACA.
Thank you very much.
Academy of Nutrition and Dietetics
AIDS Action Committee of Massachusetts
AIDS Foundation of Chicago
The AIDS Institute
AIDS Project Los Angeles
AIDS Resource Center of Ohio
AIDS Resource Center of Wisconsin
American Autoimmune Related Diseases Association
American Brain Coalition
American Dietetic Association
American Liver Foundation Allegheny Division
Asian & Pacific Islander American Health Forum
Asian Americans for Community
Association for Behavioral Healthcare - Massachusetts
Asthma and Allergy Foundation of America
California Association of Addiction
Recovery Resources (CAARR)
California Chronic Care Coalition
California Council of Churches
California Hepatitis C Task Force
California Senior Advocates League
Center for Independence of the Disabled, NY
Center for Public Policy Priorities
Chemung Valley Rural Health Network
Chula Vista Elementary School District
Clinical Social Work Association
Coalition for Pulmonary Fibrosis
Columbia County Department of Human Services
Community Access National Network
County Alcohol and Drug Program
Administrators Association of California
Crohn's & Colitis Foundation of America
Delaware HIV Consortium
The Delaware Valley Chapter of NHF
Dept. of Drugs and Alcohol, Addiction
Medicine Treatment, County of Santa Clara, CA
Diabetes Foundation of Mississippi
Down East AIDS Network
Epilepsy Foundation of Central & South Texas
Epilepsy Foundation of Greater Chicago
Faces & Voices of Recovery
Frannie Peabody Center
Gay Men's Health Crisis
Global Healthy Living Foundation (GHLF)
Graves' Disease and Thyroid FoundationHealth & Disability Advocates
Hemophilia Association of the Capital Area
Hemophilia Federation of America
Hemophilia Foundation of Maryland
Hemophilia of Georgia
Hemophilia of North Carolina
Huntington's Disease Society of America
Illinois Psychiatric Society
Immune Deficiency Foundation
Interfaith Worker Coalition
The International Autoimmune Arthritis Movement
International Myeloma Foundation
Intracranial Hypertension Research Foundation
Keville & Associates
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National Hemophilia Foundation
2013 Education Weekend
& Annual Meeting
November 15, 2012 — Each year, the RMHBDA hosts an Education Weekend Conference. The purpose of the weekend includes bringing families and affected persons together to learn about cutting edge information on hemophilia and other bleeding disorders, as well as a time fors networking and peer support. Topics in the past have included updates on recent clinical trials and research, transitions, infusion, health care and insurance, advocacy skills, and information about the National Hemophilia Foundation.
2013 Education Weekend & Annual Meeting
February 22–24, 2013, Friday, Saturday & Sunday
Hilton Garden Inn, 2023 Commerce Way, Bozeman, MT 59715
Registration deadline is February 1, 2013
Read more , including tentative schedule!
If you are interested in volunteering to help plan next year’s Education Day, please contact Brad Benne at 406.586.4050.
We couldn't have asked for a nicer day on September 8, 2012. We had over 125 walkers at our First Annual Walk for Hemophilia at Bogert Park in Bozeman, Montana. Good natured and generous supporters helped raise over $41,000 and awareness at our first ever walk. I want to send a very gracious thank you to our volunteers, team captains, and walkers for making our walk a tremendous success. We are so grateful for your participation.
We'll have a bunch of photos from a professional photographer soon, so check back here and on our Facebook page.Sincerely,
National Hemophilia Foundation Annual Meeting
Start planning now for the National Hemophilia Foundation's 64th Annual Meeting, "Mapping Our Future," in Orlando, Florida, November 8–10, 2012.
Early Registration Discount
To receive a 20% discount on your registration fees, register online by 11:59 PM Eastern Time, Monday, July 9, 2012. Hotel information will be made available to you upon completion of your registration.
Florida is one of our most popular destinations, as many attendees extend their visits to vacation in Orlando.
During our yearly three-day gathering, you can be sure we will keep you busy, with educational sessions to attend, networking opportunities with others experiencing similar issues, and social events that help you unwind. The Activity Program for Kids & Teens will be taking a field trip to SeaWorld Orlando to enjoy thrilling rides, educational exhibits, animal shows and a chance to see everybody's favorite killer whale, Shamu. Universal Studios Orlando will open its gate for our Final Night Event. What could be more fun than a theme park at night?
A sneak preview of sessions includes:
Once again, NHF will host a two-day Medical Track for Researchers and Physicians. One of the highlights of that meeting is a poster abstract presentation and reception. Separate tracks for nurses, physical therapists and social workers will provide sessions on inhibitors, sports participation and the role of social workers in genetics, respectively.
NHF Walk Program Celebrates 5th Birthday
Hemaware Magazine Notes Success of RMHBDA Chapter
by Beth Marshall | 10.22.2012 Originally Published October 2012
[Excerpted from complete article ]
It has been five years since the National Hemophilia Foundation (NHF) launched its Hemophilia Walk program, starting with five walks, held in New York City, Phoenix, Cleveland, Raleigh and Houston. During the first Walk season, about 2,700 walkers, and national and local sponsors raised more than $1 million in support of their chapters. It was a promising beginning.
Since then, the Walk program has been growing at an impressive rate. This year, chapters across the US will host 23 Walks. At press time, 8,000 people had registered to walk, and the chapters had raised $1.3 million.
. . .
Brad Benne, executive director of the Rocky Mountain Hemophilia & Bleeding Disorders Association in Bozeman, Montana, says his chapter has experienced challenges similar to the Lone Star Chapter. His chapter encompasses all of Montana and Wyoming; many members travel long distances for fundraising and educational events.
“We are small, but mighty,” Benne says. The chapter held its first Walk on September 8, 2012. At first, Benne was somewhat apprehensive about the small chapter’s ability to generate enough interest and volunteers to plan and participate in a Walk. Then he realized the potential benefits were too great to ignore. “Our board of directors saw it as another way for our chapter to sustain itself,” he says.
The Rocky Mountain chapter has held successful fundraisers before but nothing on the scale of the Walk. “Most of our fundraisers bring in about $2,000,” he says. “If our Walk raises $20,000, that will be a huge success for us.” The chapter, in fact, raised more than $25,000.
Walks bring more than money to the chapters. They can add members, too. “Walks are a great way for families to get more involved with our chapter,” Compton says. Families with newly diagnosed children can feel overwhelmed at educational events, but Walks allow them to participate, she says. In addition, kids with bleeding disorders meet each other and families bond. “New families have gotten to know us through our Walks and then will start coming to our other events,” says Compton.
Walks also help make bleeding disorders more visible in the community. “My goal of the Walk is to spread awareness of bleeding disorders to every corner of Montana and Wyoming,” Benne says. The reasons are practical as well as aspirational. For many chapter members, the hemophilia treatment center in Denver, Colorado, is an 11-hour drive. “People wind up going to local hospitals and emergency rooms that aren’t as knowledgeable as they could be about bleeding disorders,” Benne says. “The Walk is a great opportunity for our chapter and community to get their stories out there.”
. . .
We're also having our first Annual Hemophilia Walk in Bozeman on September 8, 2012 registration beginning at 9:30 am at Bogert Park. Team and Personal Fundraisers compete for the Top Team and Personal Fundraiser Awards in the state from Montana and Wyoming. All proceeds from theses fundraising efforts will benefit Rocky Mountain Hemophilia & Bleeding Disorders Association.
Saturday, September 8, 2012
Bogert Park, 325 S. Church, Bozeman
9:30 am Registration • 11:00 am Walk
To register, donate, create a team, or join a team, visit the event website
As many of you know, our boys, John and Will, have hemophilia. Hemophilia is a bleeding disorder that prevents blood from forming a clot. This is a life long illness with no current cure. The treatment is intravenous replacement of Factor VIII. It is one of the most expensive chronic illnesses and presents multiple obstacles to families who are affected. I am the Director of Rocky Mountain Hemophilia Foundation and we provide education, support, finances, family camp, summer camp opportunities for boys and girls ages 7–18, and many other resources to affected individuals from Montana and Wyoming.
We are in an effort to raise money to continue these valuable services we offer, and appreciate your help. We are having a "Walk for Hemophilia" that is supported by the National Hemophilia Foundation. The Walk is a free community on September 8 at Bogert Park in Bozeman, and registration begins around 10:00 a.m. Entertainment will include a duck race, a live D.J., and face painting, a balloonist and Cryssy's Characters. A free BBQ will be provided for participants. I realize many of you can't attend, but you can still sleep in, save gas, and get a free t-shirt! Thank you very much!
You can help support me by making a secure online donation using your credit card, just Click on this link.
Brad, Susan, John, and Will Benne
Mile High Colorado Summer Camp
The Colorado Chapter of the National Hemophilia Foundation's Mile High Colorado Camp will be July 15–20, with a Leadersip Pre-Camp Retreat July 13–15, and sponsored once again by the University of Colorado's Hemophilia and Thrombosis Treatment Center. The Camp will be at Rocky Mountain VIllage in Empire, Colorado.
Who Should Attend?
2012 Family Camp
Each summer, RMHBDA invites affected families living in Montana and Wyoming to attend a weekend retreat. The weekend is packed full of education, bonding, and fun!
Family Camp 2012
June 22 – 24, 2012
Bear Lodge Resort, Dayton, Wyoming
For more information, visit www.bearlodgeresort.com
For the parents and teens, we will have teambuilding programming led by our guest, hemophilia leadership expert, Pat Torrey and some time to relax with other families.
This is a great opportunity to learn from and share experiences with one another. We also have many great activities planned for our campers including arts & crafts projects, field games, and educational sessions for children with bleeding disorders and their siblings. Infusion classes will be offered from HTC RN, Sue Geraghty.
Note that we are also introducing a new, logo specifically for Family Camp to give this event the recognition and identity it deserves.
Facebook offers us the opportunity to stay in touch with you more in a conversational manner, and allows all of us to quickly share info. So check out our Facebook page at www.facebook.com/rmhbda or click the Facebook logo.
RMHBDA strives to provide diverse educational opportunities that add value to the lives of individuals affected with inherited bleeding disorders. There are few challenges greater than providing individuals and families with the knowledge, tools and resources they need to achieve independence; as it contributes to the well-being of their communities. All of our stakeholders — our members, our Board, our staff, and our volunteers — have benefited greatly from RMHBDA's good works. RMHBDA continues supporting families affected with inherited bleeding disorders in Montana and Wyoming by offering access to financial assistance, reasonable access to affordable healthcare, educational opportunities and resources, family and youth summer camp programs, and providing advocacy and awareness opportunities. I look forward to a bright and prosperous future for RMHBDA. If you have suggestions or concerns please feel free to contact me. This is your organization!
Thank you to our sponsors and donors for the continued support to enriching lives.