BDANENY's The Vessel June 2021

THE VESSEL The Official Newsletter for The Bleeding Disorders Association of Northeastern New York

JUNE 2021

MEET OUR 2021 SCHOLARSHIP WINNER The winner of BDANENY’s 2021 Academic Scholarship is Mikayla Boutros of Loudonville, NY. Mikayla is a Shaker High School student, who will be attending Siena College in the fall. During 2016 – 2019, she has been heavily involved in a research program at Albany Medical Center, but her other extracurricular activities include Track & Field, Student Government and Kickboxing, about which she is especially passionate.

Mikayla was diagnosed with von Willebrand disease at a very early age. However, her diagnosis did not stop her from pursuing her passion for kickboxing.

She trains about 13 hours a week and aspires to research better training methods for others with similar bleeding disorders who are involved in intensely physical sports that require many hours of training and daily physical stress to the body.

Approaching adulthood, she now must make the transition to independence, including taking responsibility for personal health care decisions, such as, “do I need blood products?” Her concern is that should she suffer a major bleed, she may not be in a position to make those decisions. Key people around her must be made aware of what to do in those circumstances, particularly since major problems can result from seemingly minor events. Mikayla is a strong advocate for the expanded use of emergency medical identification (EMI). She wants to advocate for and encourage parents of children with bleeding disorders to use EMI and make it accessible to EMTs/school nurses/camp counselors/day care providers – in any and every circumstance where the child might be vulnerable.

Mikayla finds that her experience in living with a bleeding disorder has created a passion for the medical field. She hopes to study pred-med at Siena and go on to medical school. She wants to research better training methods for athletes with a bleeding disorder, and eventually become either a general surgeon or an Oral Maxillofacial surgeon.

In This Issue

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Profile: Louise O’Leary

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BDANENY CARES Grant

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ERISA Plans Warning

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Legislative & Regulatory Update

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Upcoming Events

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The American Rescue Plan

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BDANENY Board Application

BDANENY ANNOUNCES NEW GRANT The Board of Directors of the Bleeding Disorders Association of Northeast New York have launched a new grant program to fill an unmet need in our community. Called the BDANENY CARES Grant, the aim of the program is to encourage individuals in the bleeding disorder community to maintain a healthy lifestyle that promotes physical and mental health. Physical and mental health are important components of successfully managing a bleeding disorder. Being a well-rounded person promotes better job and school performance, inspires the individual to keep growing, and most importantly helps increase the confidence to gain new skills.

Continuing to discover what one can do and learning to challenge your mind and body enable individuals to learn the skills and courage needed to face larger challenges in life. Such learning doesn’t always take place in a classroom.

The purpose of this grant is to promote the physical, emotional, social, intellectual and moral/spiritual health of those living with a bleeding disorder. Though the CARES Grant, the BDANENY has established a program to provide financial assistance to wish to pursue a non-academic opportunity that would support their overall wellbeing or personal development. The grant is intended for programs such as tuition for extracurricular activities, specialized equipment for participation in athletic activities or travel expenses related to participation in cultural activities.

Outside of our busy everyday schedules, it’s important that we also take part in purposeful activities that add joy to our lives. Having an outlet separate from work and school has been shown to lower stress, promote better physical health, enhance sleep, provide more social connections, improved scholastic performance and increased happiness. In particular, students who participate in extracurricular activities are more likely to experience better attendance, higher levels of achievement, and aspirations to higher levels of education.

BDANENY is proud to encourage such participation by offering the BDANENY CARES Grant.

Our first grant recipient…

Paige Van Patton reached out to the BDA earlier this year looking for support of her attendance at the National Student Leadership Conference on Forensic Science. This prestigious program selects outstanding high school students from around the world to participate based on academic excellence, extracurricular involvement, and demonstrated leadership potential.

At the NSLC, she would have the opportunity to participate in leadership development workshops where attendees develop skills including effective communication, public speaking, and conflict resolution. In addition, attendees participate in lectures and workshops that give them a better understanding of Forensic Science and would prepare them for college. Students attend briefings and participate in forum discussions led by national and world leaders in the field of Forensic Science.

The problem? The cost to attend is $4,969, including the program, room and board, course materials, program activities, travel to the conference and money for other incidental expenses. Although Paige is currently employed at our local bakery in order to help pay her way her job has limited hours, and family cannot afford the entire amount. So she reached out to us for assistance.

Since her request did not fall within the parameters of any of our traditional support programs, and her request was so compelling, the Board of Directors decided to create a new program that would provide young people such as Paige some level of support to pursue this opportunity for personal development.

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A Word from the Executive Director Getting Reacquainted What a miracle modern medicine is! In 1928, the discovery of penicillin changed the world of medicine.

With its development, infections that were previously severe, and often fatal, could easily be treated. Serious diseases that once killed thousands of youngsters each year have almost been eliminated in many parts of the world because of the widespread use of childhood vaccinations. It was in 1965 that Judith Graham Pool discovered cryoprecipitation, the methodology by which factor VIII can be prepared from human plasma. The capacity to discover a useful drug or treatment and build optimal features of safety and effectiveness into a final product is one of the great hallmarks of medical science. In our busy lives, we do not often stop to reflect on how incredible these discoveries truly are and how lucky we are to live in a western nation where such treatments are easily available.

The pandemic has disrupted our lives in ways that are too numerous to count – and will undoubtedly impact us for years to come, in ways we have yet to discover.

Over the past eighteen months, the uncertainty, the fear, the isolation and the grief that has gripped us as individuals and as a nation has been hard to cope with, especially for a country used to instant gratification.

Being forced to isolate from our friends and family, being forced to forgo our favorite activities and events is anathema to the American identity. And the Hunger Games-like rollout of early vaccine distribution only served to reinforce the “every man for himself” mindset. As a result, we’ve lost something important to our core identity; We’ve lost some of the sense of community that animated many of our get togethers and provided the deeper sense of satisfaction that comes from being connected with others. But community spirit is like a muscle; if you don’t use it, you lose it - but you can build it back up again.

Modern medicine has come through for us again. As I write this, 72% of New Yorkers over the age of 18 have received at least one dose of the vaccine. Re-

strictions have been lifted. We can again hug our family, shake hands with colleagues and even meet in person with that Match.com “date” that you’ve been corresponding with.

The bleeding disorders community has likewise been sidelined over the past year and a half, but we’re ready to get back together again! We’ve got a number of inperson events scheduled and we look forward to a reset and renewal of the unique fellowship of the BDANENY. We know it’s been a while since you socialized, so we’re starting things off with an activity.

Join us at the End of Summer Un-“Wined” event, featuring a cornhole tournament. This is a wind up to our UNITE Walk for Bleeding Disorders. And if your taste tends toward more elegant events, be sure to mark your calendar for the Black & Blue Bash. (See Calendar of Events for more information.)

It may take a while to get back into the swing of things, but when you’re comfortable, come out and join us!

One thing the pandemic has taught us is that we are resilient.

The Hemophilia Federation of America and the National Hemophilia Foundation are pleased to share a new partnership called the Together Project.

Through the Together Project, HFA and NHF will work collaboratively on important issues that affect the bleeding disorders community. The first collaboration is focused on mental health and wellness in the bleeding disorders community, raising awareness, providing resources, and sharing coordinated messaging.

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The American Rescue Plan May Lower Your Health Care Costs On March 11, 2021, President Biden signed the American Rescue Plan Act of 2021 (H.R. 1319) into law. The $1.9 trillion package is intended to combat the COVID-19 pandemic, including the public health and economic impacts. One of the many provisions in the Plan is the opportunity for some individuals to reduce the cost of their health care premiums.

If you currently have coverage through the New York State Marketplace, you will likely be eligible to receive some assistance in paying your premium.

• If you are eligible* for ACA subsidies, you will receive more help paying for Marketplace coverage.

• Individuals and families earning between 100-150% of the Federal Poverty Level (FPL)** are eligible for a silver tier health insurance plan with $0 premiums and a significantly lower deductible.

• Individuals and families earning between 150-400% of FPL will see substantial savings; they will get a big boost to the premium subsidies that they currently receive/would receive.

• Individuals and families earning above 400% of FPL (previously ineligible for subsidies due to income) are now eligible for help with their premiums. People in this category who buy a Marketplace plan will now be eligible for tax credits and will pay no more than 8.5% of their annual income in premiums for a benchmark silver plan.

• The enhanced subsidies are available for the entire 2021 plan year to anyone who qualifies and enrolls in Marketplace coverage – whether you enrolled during the regular 2021 open enrollment, or enrolled during the Special Enrollment Period (before or after enactment of the ARP). These enhanced subsidies will also be available for 2022.

• If you don’t take action to reset your premiums, and your Marketplace doesn’t automatically update them, you will eventually receive a refund when you file your 2021 federal income taxes next year.

If you have individual coverage, on- or off-Marketplace, visit www.healthcare.gov to see if you qualify for new or enhanced subsidies and/or to make sure that your premium subsidies have been updated. The new, more generous premium subsidies are retroactive to January 2021.

• If you receive or are expected to receive unemployment insurance (UI) benefits during any point in 2021 you may be eligible for enhanced Marketplace subsidies.

• Many people in this category will be entitled to a benchmark silver plan with $0 premium and additional cost sharing subsidies to help with deductibles and copays.

• There are several things to note here: • You will have to meet additional eligibility criteria for Marketplace subsidies.

• These special rules will only be in effect during 2021.

Due to implementation complexity, enhanced subsidies may not be available until summer of 2021.

*In order to receive enhanced subsidies, you must meet underlying eligibility criteria for subsidies (i.e., you do not have an offer of affordable coverage from your employer). **The Federal Poverty Level for 2021 is $12,880 for a single individual and $26,500 for a family of four.

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⋲Tuesday Talks⋲ Our Tuesday Talks have been a great way to stay in touch and stay informed throughout our collective pandemic isolation. Thanks to our generous sponsors, we have been able to offer the following educational/activity programming: Wreath-Making Paint & Sip VonWillebrand Disease (2 seminars) Bracelet Making Tai Chi Home Infusions Gene Therapy Jeopardy

K-taping Cooking with Chef Mike Seed Starting VideoGaming Journey to Jivi Plasma Safety Insurance Update

We plan to do at least one more Tuesday Talk over the summer “Setting Educational Expectations,” where we will discuss how to effectively communicate with your child’s school.

We hope you have enjoyed these Zoom meetings and we plan to resume more of them in the fall!

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Legislative & Regulatory Update court ruling that had struck down the law’s individual mandate provision. The decision marks the third time that Obamacare, officially known as the Affordable Care Act, has survived a challenge before the Supreme Court since former President Barack Obama signed the landmark legislation into law in 2010.

News from New York State News from Washington:

The state Legislature wrapped up its legislative sesCMS Reprimands Drugmakers sion early on Friday, June 11, capping a six-month stretch where lawmakers waded through bills to adOn May 17, CMS sent letters admonishing these drugdress the COVID-19 pandemic and pass a $212 billion makers who have announced that they are rescinding budget. The session included votes in March to legaltheir discounts on 340B drugs. Beginning in July ize marijuana, add mobile sports betting, raise income 2020, six manufacturers began taking specific actions taxes on those earning more than $1 million, and inthat limited a participating hospital or clinic’s access crease aid to schools. to discounted drugs available for purchase under the 340B Program. Some manufacturers stopped provid- Although the myriad scandals surrounding the Govering the 340B ceiling price on their drug products and nor – including sexual harassment claims reported by dispensed through contract pharmacies, while others aides, skewed reporting of COVID-19 deaths in nurslimited sales by requiring specific data submissions or ing homes, shoddy construction of the Mario Cuomo selling drug products only after a compliance audit.

Bridge, and a $5 million book deal, the work on which was carried out by state employees – precluded the Last month, Health Resources and Services Admintype of big end-of-session deal making that we are istration (HRSA) Acting Administrator Diana Espiused to seeing, this is the first year in a two-year cycle nosa sent letters to six pharmaceutical manufacturers and those bills that have not been resolved will not stating that HRSA has determined that their policies need to be reintroduced in January. Bills that have that place restrictions on 340B Program pricing to passed both houses will be sent in batches to the Govcovered entities that dispense medications through ernor’s office between now an the end of the year. pharmacies under contract have resulted in overcharges and are in direct violation of the 340B statute.

Hemophilia Treatment Centers are 340B covered entities.

ACA Survives the Latest Court Challenge On June 17, the Supreme Court ruled 7-2 against Texas and other Republican-led states seeking to strike down Obamacare in the law’s latest test before the nation’s highest court. The court reversed an appeals 6

Legislative Update cont’d.

Here are the bills that the BDA has been following:

STATUS: This bill passed both the Senate and Assembly. It must be delivered to the Governor before S.5299/A.A.1741 “Patient Assistance Bill” Requires the end of the year. insurance companies or pharmacy benefit managers to apply price reduction instruments for out-of-pocket S.6435/A.7129 “Prior Authorization Bill” requires expenses when calculating an insured individual's use of evidence-based and peer reviewed clinical recost-sharing requirement. view criteria; relates to prescription drug formulary changes and pre-authorization for certain health care STATUS: This bill passed the Senate, but only adservices; requires that pre-authorization approval exvanced to 3rd reading in the Assembly. tend for the duration of the prescription or treatment for a specific condition.

S.3566/ A.5854“Pharmacy Access Bill” Relates to the purchase of prescription drugs by pharmacies; establishes the same reimbursement amount shall be provided to all pharmacies, i.e. the same benchmark index, including the same average wholesale price, maximum allowable cost and national prescription drug codes to reimburse all pharmacies participating in the insurance network regardless of whether a pharmacy is a mail order pharmacy or a non-mail order pharmacy.

STATUS: In the Senate, this bill advanced to 3rd reading and was referred to the Rules Committee.

In the Assembly, the bill never advanced out of the Insurance Committee.

We anticipate asking for your help with a Virtual Advocacy event later in the fall and whenever the Pharmacy Access bill is sent to the Governor for signature.

CALL FOR NOMINATIONS BDANENY BOARD OF DIRECTORS Serving on a Board of Directors for a local non-profit like the BDANENY is an excellent opportunity for any professional. Whether you are interested in expanding your leadership skills, or you’re simply looking for new ways to give back to the community, consider applying for a seat on our Board of Directors. We are now accepting applications for two at-large seats.

Qualifications Professional experience in business, government, philanthropy, or the nonprofit sector and/or a member of the bleeding disorders community.

A commitment to and understanding of the BDANENY mission An ability to build consensus among diverse individuals Personal qualities of integrity, sincerity, and a desire to improve the lives of individuals and families impacted by an inherited bleeding disorder Commitment parameters Term - three years, renewable Time – Board meetings every month; 10 remotely and 2 in-person; meetings typically last 90 minutes

Support of BDANENY Fundraising Events To download an application, visit: www.bdaneny.org/BoardApplication 7

Meet Louise O’Leary Louise O’Leary began working with the Albany Med Hemophilia Treatment Center in March, but she is no stranger to providing advice, support and resources to families in need. Here is what she would like you to know about the newest Social Worker at the HTC: “I have worked in the Human Service field for over 20 years. I have primarily worked in Schenectady County working for several not-forprofit organizations assisting children at risk for out of home placement or recently returned to the home. I have also worked with biological and foster families and children that have been placed in the care of the Department of Social Services care.

For the past 12 years, have worked exclusively with adults who are homeless, impoverished and at risk of being exploited. For the past 3 years, I have worked as a Director of a homeless shelter and supervised Case Managers and Shelter staff that provided assistance with rapid rehousing, referrals for services and direct contact to the Department of Social Services. After a very lengthy and exhausting career, I have switched gears and currently I am the Medical Social Worker with AMC Pediatric Hematology working for Dr. Porter. I am very excited to learn about a whole new population of people that I can help. “

An Emerging New Threat Taking Aim at High Cost Specialty Medications Alternative Funding Models Large self-insured employers and other health care plan sponsors have long been concerned about rising prescription drug costs. A somewhat recent development in the Pharmacy Benefit field, is the emergence of “Alternative Funding Programs.” Alternative Funding promises to reduce specialty drug costs by up to 100% yet assure that employees never go without their medication. They accomplish this by getting the employees on free medication programs that are offered by pharmaceutical companies and by co-pay optimization. These companies receive 30% of what the ERISA plan would spend. There are at least 16 active entities pushing this business model.

Employees whose employer has contracted with one of these entities will get a letter in the mail stating that their medication is no longer covered by their health insurance plan. They will then be instructed to work with the “advisor” to obtain new coverage. Their plan of action is to first assess the employee’s income eligibility for existing programs, then, try to switch the patient to a different drug. Finally, if they are unable to offload the cost of the drug, they will ultimately do a medical necessity override. Post-medication review, they do not include supplies such as syringes, which are only available by prescription.

Manufacturers have raised the concern that “goodwill” programs offering low to no-cost drugs will end if demand is too high. Health insurers are uneasy about this program as well. These entities target only ERISA plans, which are those self-funded plans for which the employer itself assumes the financial risk of proving health insurance to its employees. These plans account for the majority of private insurance plans and are not governed by ACA rules.

NHF and HFA are collaborating to advocate for families in the bleeding disorder community who are impacted by this stratagem. They are also working with 19 other advocacy groups to ensure that appropriate pharmaceutical coverage remain in place.

If you or a family member has been impacted by this practice please contact us, and we can put you in touch with advocates who will ensure that access to your needed medications is not interrupted.

August 25—August 28, 2021

Leading community members and experts on hemophilia and other bleeding disorders come together every year to present the most recent advances, exchange the latest science and discuss the newest clinical applications designed to improve patient care.

Coming Events

Coming Events

COMING SOON! BDANENY will be hosting a family Movie Night featuring “Bombardier Blood” Watch for an announcement of date and time 11

Contact Us BDANENY Office 333 Broadway Suite 320 Troy, NY 12180 (518) 729-3577 BDANENY.org memberservices@bdaneny.org

BDANENY Board of Directors and Staff President……………………….. Bruce Weiner Treasurer…………………………. Cindi Keeler Board Member…………………. Bill Brownell Board Member………………….. Dave Huskie

Board Member………... Christina Mastrianni Board Member………. Juliemar Abreu Boria Executive Director………………. Beth Mahar Operations Manager……... Patricia Bengraff Administrative Assistant…….. Melissa Deeb