A newsletter on and about arthritis to keep you informed on treatment advances,
  research, personal accomplishments / features, and opportunities for
  engagement with the Arthritis Foundation, Northeast Region.
  September 2013


A Consumer’s Guide to the Affordable Care Act


It is known by a number of names. The full name of this sweeping health legislation is Patient Protection and Affordable Care Act. You may hear it referred to as ObamaCare. Most often, and in the Northeast Regional Reporter, it is referred to as the Affordable Care Act (ACA.)

Passed by Congress and reviewed by the United States Supreme Court, the Affordable Care Act is the law of the land. As a result, many more millions of people in America will be covered by health insurance and improved access to health care. 



For people with chronic illnesses, such as arthritis and other rheumatic disease, this legislation is especially helpful.

  • Everyone is eligible for health insurance. No one may be denied insurance coverage due to a pre-existing condition, such as arthritis, and treatment for pre-existing and chronic conditions must be covered
  • Life time caps on coverage are gone. No more $1million (or less) limits on coverage.

Three important dates

  • October 1, 2013: Open enrollment to purchase health insurance through the Health Insurance Exchanges, also known as the Health Insurance Marketplace, begins.
  • January 1, 2014: Coverage purchased through an Exchange / Marketplace begins for those enrolled through the exchange.
  • March 31, 2014: Open enrollment ends.

A few quick facts

  • If you already have health insurance that meets your needs and that you can afford, for example insurance provided through your employer or Medicare, you do not have to change. Simply keep what you have.
  • The purchase of health insurance is mandated for most people. If you are required to buy health insurance and do not do so, a penalty will be imposed. 
  • Please click here for information on the mandate to have insurance.
  • Subsidies through tax credits are in place for those who qualify according to income and family size. Click here to calculate your eligibility. 

 How To

  • Health insurance may now be purchased through the Health Insurance Exchanges, also called the Health Insurance Marketplace. The Exchanges / Marketplaces open for enrollment on October 1, 2013. Coverage begins in January 2014 for those enrolled through the exchange.
  • New York State operates its own Exchange. Click here for a link to the New York State Exchange / Marketplace.
  • The state governments of New Jersey and Pennsylvania elected to use the federal Exchange / Marketplace. Click here for a link to the federal Exchange / Marketplace.


The ACA has introduced many new terms into everyday language (including Affordable Care Act and Obamacare.) Here is a glossary of words you can expect to hear and read in news reports and general conversation.

  • Essential health benefits (EHB) -- benefits that must be offered in health plans through the exchange. There are ten essential health benefits, including outpatient care, prescriptions, preventive services, emergency services, and hospitalization. Click here for information on essential health benefits.
  • Health Insurance Exchange / Marketplace - According to the NYS Health Benefit Exchange web site, “An Exchange is an organized marketplace designed to help people shop for and enroll in health insurance coverage. Individuals, families and small businesses will be able to use the Exchange to help them compare commercial insurance options, calculate costs and select coverage…” Click here for information on Health Insurance Exchanges / Marketplaces.
  • Individual mandate - Beginning in 2014, the ACA requires most individuals to have health insurance coverage. Click here for information on the individual mandate.
  • Medicaid Expansion - The new health care law provides for expanded Medicaid coverage in some states. States were granted the choice to opt-in or opt-out. Click here to find out if you qualify for Medicaid. Click here for a listing of states that have signed on for Medicaid expansion.
  • Mental health parity - Mental health and substance abuse coverage is now considered an essential health benefit and must be covered by all new individual and small group plans. 
  • Open enrollment - The time when individuals and small businesses may sign up for health insurance through the exchanges. Open enrollment begins October 1, 2013 and ends March 31, 2014. Open enrollment periods will be provided in the future, as well. Click here for information on open enrollment.


Coming Soon on the Arthritis Foundation Web Site

The Arthritis Foundation will be launching a Marketplace toolkit in early October 2013 to help our constituents without insurance understand the new health care options and what they need to consider as a person living with arthritis. This resource is designed to be a first stop for individuals with arthritis as they explore their options for coverage in the Exchange / Marketplace. Click here to learn more.

Also On the Net 

  • Click here for a go-to site for information, requirements, and purchasing health insurance.
  • Click here for comprehensive, easy to use information on the ACA.
  • Click here to find out, “How does the ACA affect me?”
  • Click here for Health Exchange / Marketplace info.
  • Click here for services for seniors.
  • Click here for fact sheets on various aspects of the Affordable Care Act


Dr. Marsha Laufer and Dr. Henry Laufer
Fund OA Research

Marsha Laufer, PhD (left) and Henry Laufer, PhD (right) have provided support for an important study that may lay the foundation for groundbreaking research into osteoarthritis (OA).

Their major gift of $1million to the Northeast Region funds the Arthritis Foundation Flagship Initiative in Osteoarthritis-II. OA is the most prevalent form of arthritis, affecting 27 million Americans according to the Centers for Disease Control. To date, the only treatment for OA has been to manage pain and maintain function. When that approach becomes ineffective, joint replacement surgery is a person’s only recourse. Research has begun to change that scenario of limited treatment options.

It is known that a tear to the anterior cruciate ligament (ACL) starts an inflammatory process in cartilage and bone that eventually leads to the development of osteoarthritis. OA is diagnosed with an x-ray. However, it can take up to ten years for OA to be seen on x-ray. According to John Hardin, Director of Osteoarthritis Research for the Arthritis Foundation, “An ACL tear immediately triggers the OA disease process at a molecular and cellular level…If we can detect and measure these early changes, we could likely discover treatments to prevent or slow down the disease in the general population.” With early detection, researchers could potentially discover tools and treatments to identify and reverse OA before symptoms ever appear.

The Laufer gift helps to fund a team of researchers at the Hospital for Special Surgery in New York City; Mayo Clinic in Rochester, Minnesota; and the University of California, San Francisco to demonstrate the feasibility of using traditional and new MRI techniques to measure the molecular changes that begin to appear immediately after an ACL tear. Results of this study may enable a future clinical trial to test compounds that can potentially treat OA. The feasibility study is the first step in this process.

Thanks are expressed to Marsha Laufer and Henry Laufer for their important support of osteoarthritis research.

At left is a graphic of the anterior cruciate ligament (ACL.) By studying tears to the ACL it is anticipated that compounds to stop the progression of osteoarthritis (OA) can be identified. Marsha and Henry Laufer are funding a feasibility study which will lay the groundwork for a national project to develop early intervention protocols for OA treatment.



Research Links

This section highlights research. Learn how to participate and read about a newly published finding on how genes influence remission in juvenile arthritis.

Participate in Arthritis Research Trials: PART
A site developed with consumers in mind, this is a web site to help you learn about clinical trials and arthritis research. PART guides you through various aspects of clinical trials. Visit the site for an overview of the clinical research process, how to participate, and how research advances care for arthritis. Click here for PART.


Arthritis Internet Registry
Advance arthritis research without leaving your home by joining the Arthritis Internet Registry (AIR). Registration is open to people with all types of rheumatic disease. This is what is required: sign up with AIR, complete a survey form, and a follow-up form every six months. If you are willing, visit a local laboratory for a free blood draw. This is how you can help researchers improve treatments, hopefully even find a cure. Click here for AIR.


Researcher Studies Remission in Juvenile Arthritis
It turns out that genes play a key role in remission in juvenile arthritis, a finding recently published by James N. Jarvis, MD, Clinical Professor of Pediatrics at the University of Buffalo in the School of Medicine and Biomedical Sciences. This major research study was supported by grants from National Institutes of Health, the Oklahoma Center for the Advancement of Science and Technology, and the Arthritis Foundation which continues to fund Dr. Jarvis’ work. Click here to read about this                                                             important finding. 


Help Get More Research Funding:
Become an E-advocate

When you become an E-advocate you raise your hand in support of public policies that result in new treatments and improved quality of life for people with arthritis and other rheumatic diseases.

These are the priority areas for advocacy in 2013:

  • Continued funding for research
  • Efforts to ensure adequate numbers of pediatric rheumatologists throughout the country
  • Passage of legislation that does away with very high co-payments for specialty drugs for                                   inflammatory arthritis.

Serving as an E-advocate makes a difference. Plus, it is empowering (you are helping yourself and many others), is accessible (performed through email), and effective (funding for arthritis research has been preserved for the National Institute of Arthritis and Musculoskeletal and Skin Diseases.) Click here to learn about e-advocacy and declare your support.


New Web Site Launched, Just for Kids with Arthritis and Their Families


Connect with families wherever you live, through this newly designed, user-friendly, and informative web site. You will find info on the various types of juvenile arthritis, medical care, and research. Inspiring events and gatherings, such as the national JA conference, camps, kids summit, and local family days are featured. 

Share the site with your children – there are special sections for kids and teens.

Click here to get connected on arthritis in children.




Held in 13 sites throughout the Northeast Region, there is a Jingle Bell Run/Walk for you.

The Jingle Bell Run/Walk for Arthritis is...

  • THE event of the season. 
  • a USTAF-certified 5-K race. Your time counts!
  • an opportunity to have fun with friends and family. You are encouraged to dress up for the season, the more creative the better.
  • a major fundraising event for the Arthritis Foundation. Form a team to add your support to our cause.

The Jingle Bell Run is also the place for Advocacy in Action. Arthritis Foundation Advocacy Ambassadors will provide you with the opportunity to sign a petition asking Congress to maintain funding for arthritis research. You may also choose that day to become an E-advocate or Ambassador.
Click here to locate a Jingle Bell Run/Walk in your area.





Attention Runners

Fulfill your dream of running a marathon. And there is no better way to do it than to fund raise for the Arthritis Foundation while you are at it. There are two opportunities coming up – the MVP Health Care Rochester Marathon benefiting the Arthritis Foundation and the ING New York City Marathon. 


Date: September 22, 2013

Arthritis Foundation Contact: Melinda Merante at mmerante@arthritis.org

You can support the cause from wherever you are, even after the race. Click here to pledge your support.

Or, perhaps you prefer Facebook. Click here



Date: November 3, 2013

Arthritis Foundation Contact: Courtney Gush at cgush@arthritis.org

You can support the cause from wherever you are. Click here to pledge your support.


Close to Home


We are where you need us to be, which is in your community. The Arthritis Foundation works in partnership with hospitals, businesses, and local organizations to bring helpful and engaging programs to you. Read on! Click here to find out what is going on in Eastern Pennsylvania, Long Island, New Jersey, New York, Northeastern New York, and Upstate New York.

Eastern Pennsylvania
111 S. Independence Mall East
Suite 500 - Bourse Building
Philadelphia, PA 19106
Phone: 215-574-3060
Email: info.epa@arthritis.org

Become a member of the Arthritis Foundation Programs for Better Living community by enrolling in an instructor training program. Two are coming up – one for the Arthritis Foundation Aquatic Program and one for the Arthritis Foundation Exercise Program. Click here to learn more about these programs. 

Arthritis Foundation Aquatic Program Instructor Training
October 30, 2013, 9am-5pm
Bethlehem Township Community Center
2900 Farmersville Road, Bethlehem, PA 18020
Contact: Danielle Stephens at dmstephens@arthritis.org


 Arthritis Foundation Exercise Program Instructor Training
November 8, 2013, 9am-5pm
Cornerstone Fitness
847 Easton Road, Warrington, PA 18976
Contact: Danielle Stephens at dmstephens@arthritis.org

Health Summits are interactive, interesting, and helpful workshops focusing on pain management and quality of life. Two are being held in the eastern Pennsylvania / south Jersey area. Details are below. To register for a Health Summit call 215-574-3060, extension 4729. The fee of $10 includes a light breakfast and full lunch.

Berks County at Keystone Villa at Fleetwood, 501 Hoch Rd., Blandon, PA 
on October 19. 
Cooper University Hospital, 1 Cooper Plaza, 10th floor, Camden, NJ on
November 16.


All are welcome: Children with arthritis and other rheumatic disease, siblings, and parents are invited to attend Family Day on November 16, 9am to 1pm at St. Christopher’s Hospital for Children, 3601 A St., Philadelphia, PA. Come for workshops and presentations, supervised activity area for children over five, and to connect with other families who have a child with rheumatic disease. Click here to register online. Family Day is free of charge.


Long Island
150 Broadhollow Rd., Ste 122
Melville, NY 11747
(631) 427-8272 
Email: nsimingt@arthritis.org

Sign on with the Arthritis Foundation as a volunteer. You are needed! Visit our table at the Volunteer Fair at the Northport Library, 151 Laurel Avenue on Friday, September 27 from 4 to 7pm. Opportunities include assisting at special events, advocacy, Women on the Move, Walk, and Jingle Bell Run. Volunteer with us to help others who have arthritis. You are also welcome to call us at (631) 427-8272 or email at info.li@arthritis.org.


Attend the Senior Health Expo sponsored by State Senator Kemp Hannon on Thursday, October 3 from 9am to 1pm at St. Paul’s Field House in Garden City. Available are free flu shots plus blood pressure, vision, and breathing screenings. Be sure to stop by the Arthritis Foundation table for free information and discussion. Free of charge. Registration is not required. 



Join Michael Repice, MD, Rheumatologist and Chief of Medicine at Huntington Hospital on Wednesday, October 23 at 1pm at Half Hollow Hills Library in Dix Hills for a program on “All About Arthritis,” which includes a Q&A. Free of charge. Registration is not required.



New Jersey
555 Route 1 South, Suite 320
Iselin, NJ 08830
Phone: 732-283-4300
Email: info.nj@arthritis.org

For families who have a child with arthritis or other rheumatic disease
Discover “Hidden Treasures” at this Family Day being held at the Edison Hotel in Edison, New Jersey on Sunday, September 29 from 9am to 3pm. All are welcome: children with arthritis and other rheumatic diseases, siblings, and, of course, parents. Featured are thought provoking sessions led by health professionals, discussion groups for parents, and activities for all the children. Special guest speaker, Rachel Del Vescovo will share her personal story of courage and determination in living with JA. Family Day is free of charge. Click here to register. Thanks are expressed to the Presenting Sponsor, Novartis.

New York
122 East 42nd Street, 18th Floor
New York NY 10168-1898
Phone: 212-984-8700
Email: info.ny@arthritis.org

The “Arthritis Basics for Change (ABC)” presentation is being held on Friday, October 11 at 3pm at Beth Israel Medical Center, Podell Auditorium, 1 Nathan D Perlman Ave in Manhattan. The ABC program provides information on osteoarthritis, rheumatoid arthritis, exercise, diet, and helpful resources. This program is conducted in partnership with the Kurpus Health Information Center of Beth Israel Medical Center. Free of charge. To register, call 212-984-8730.

“Rheumatoid Arthritis and Infectious Diseases: Recommendations for Staying Well” is the topic for discussion on Thursday, October 16 from 5:30 to 6:30pm at the Hospital for Special Surgery, Richard Menschel Education Center, 535 E. 70 Street in Manhattan. Free of charge. Registration is not required.


Attend the Charles L. Christian Symposium for a helpful exchange of information on osteoarthritis being held on Thursday, October 24 from 5:30 to 6:30 pm at Hospital for Special Surgery, Richard Menschel Education Center, 535 E. 70 Street in Manhattan. Free of charge. Registration is not required.

If you are not able to attend the live Symposium, click here to view the 2012 program online.

Northeastern New York
855 Route 146
Suite 170
Clifton Park, NY 12065
(518) 456-1203

Join special guest Senator Neil D. Breslin, New York State Senate, at an “Advocacy Training: Making Your Voice Heard” on Monday, September 30 from 6 to 8pm at the Arthritis Foundation office, 855 Route 146, Suite 170 in Clifton Park. Advocacy is exciting, stimulating, and rewarding. For further information and to register, contact Sonya Andrew at 518-456-1203 or sandrew@arthritis.org. The Advocacy Training is free of charge.

Upstate New York
3300 Monroe Ave, Ste 319 
Rochester, NY 14618 
(585) 264-1480 

World Arthritis Day is October 12, 2013. Two programs are being held in upstate New York to make note of this particular day. Both programs are free of charge.

"Put Pain in its Place: How to Get Osteoarthritis Pain Under Control" is being held on Wednesday October 9 at 1:30pm at Ken-Ton Presbyterian Village, 3735 Delaware Avenue, Kenmore, NY 14217. Topics include understanding osteoarthritis, self-management, pain management, and exercise. To register, contact Cynthia Pegado at (716) 507-4543 or cpegado@arthritis.org. Also, click here for additional information on Put Pain in its Place.

Natur-Tyme and the Arthritis Foundation team up on Thursday, October 10 from 12 to 2pm and 5 to 7pm at Natur-Tyme, 3160 Erie Blvd., East DeWitt. Topics on the agenda include exercise and nutrition. To register call 315-488-6300.

Tai Chi improves strength, balance, and endurance. Take your choice of two Arthritis Foundation Tai Chi classes in the Syracuse area.

 Mondays from 4:30 to 5:30pm at Upstate University Hospital’s Healthlink Headquarters, 6333 Rte. 298, East Syracuse, until November 4. Call 315-464-8668 to register.

Tuesdays from 2 to 3pm at Manlius Senior Center, 1 Arkie Albanese Drive, Manlius through the Upstate University Hospital OASIS program. Call 315-464-6555 to request a catalog to register.



Contact us at NortheastReporter@arthritis.org.
We especially wish to hear your suggestions for articles.



Editorial Board


Stephen A. Smiles, MD
Member, Northeast Regional Board and New York Chapter Board, Arthritis Foundation 
Co-Director, Center for Arthritis and Autoimmunity NYU Medical Center, 
Clinical Associate Professor of Medicine NYU School of Medicine

Suzanne Bliss
President and CEO
Northeast Region, Arthritis Foundation

Sharon Jaycox Daitz
Vice President, Program
Northeast Region, Arthritis Foundation

Beth Gottlieb, MD
Chief, Division of Pediatric Rheumatology
Director, Pediatric Rheumatology Fellowship Training
Steven and Alexandra Cohen Children’s Medical Center of New York

Andrew B. Weinberger, MD, FACR
Immediate Past President, New Jersey Rheumatology Association
Member, New Jersey Chapter Board, Arthritis Foundation
Rheumatologist, West Orange, New Jersey

The Northeast Regional Reporter is supported in part by the following funders:
Pfizer, Genentech, Amgen.


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