A library of past information.
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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
Latino Commission on AIDS
Legal Action Center
Lifelong AIDS Alliance
Louisville Healthcare Navigators
Lupus Foundation of America
Lupus Foundation of Florida, Inc.
Lupus Foundation of Mid and Northern New York, Inc.
Lupus Foundation of Southern California
Lupus Research Institute, National Coalition
Massachusetts Health Council
Mary M. Gooley Hemophilia Center
Massachusetts Association for Mental Health
Massachusetts Association of Behavioral
Massachusetts Pharmacists Association
Men's Health Network
Mental Health America
Mental Health America of Colorado
Mental Health America of Illinois
Mental Health America of Indiana
Mental Health America of San Diego
Mental Health Association of Michigan
Mental Health Association of New York State, Inc.
Mental Health Systems
Michigan Lupus Foundation
Minnesota AIDS Project
Minority Health Institute, Inc.
National Alliance of State & Territorial
National Alliance on Mental Illness
National Alliance on Mental Illness Alabama
National Alliance on Mental Illness California
National Alliance on Mental IllnessDelaware
National Alliance on Mental Illness Illinois
National Alliance on Mental Illness Iowa
National Alliance on Mental Illness Massachusetts
National Alliance on Mental Illness GreaterChicago
National Alliance on Mental Illness Ohio
National Alliance on Mental IllnessWashington
National Alliance on Mental Illness WillGrundy
National Alopecia Areata Foundation
National Asian Pacific American Families
Against Substance Abuse
National Association of County Behavioral
Health and Developmental Disability Directors
National Association of Hepatitis Task Forces
National Association of Hispanic Nurses (NAHN)
National Association of Social Workers, California
National Association of Social Workers, Washington State
National Council for Community Behavioral Healthcare
National Family Caregivers Association
National Fibromyalgia & Chronic Pain
National Minority Quality Forum
National Psoriasis Foundation
National Spasmodic Dysphonia Association
National Viral Hepatitis Roundtable
National Women ad AIDS Collective (NWAC)
New England Hemophilia Association
New York Association of Psychiatric
New York State Partners in Policymaking
New Yorkers for Accessible Health Coverage
Ohio AIDS Coalition
Parkinson's Action Network
Pharmacists Society of the State of New York
Prevent Cancer Foundation
Pulmonary Hypertension Association
Rehabilitation and Pain Management Associates, Baltimore, MD
Rocky Mountain Hemophilia Association
RVL S.C.O.R.E. (RVL Spinal Cord Org for Regaining Excellence)
San Diego Center for Patient Safety, UCSD School of Medicine
Sjogren's Syndrome Foundation
Society for Women's Health Research
Sound Mental Health
State Associations of Addiction Services
State of Texas Kidney Foundation
The Sturge-Weber Foundation
Toledo Area Jobs with Justice
Tremor Action Network
UJA-Federation of New York
Urbana Human Services Organization
Veterans Health Council
Vietnam Veterans of America
Virginia Hemophilia Foundation
Washington Community Mental Health Council
Western Pennsylvania Chapter of the
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.
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.