Americans with arthritis have a lot of questions about the health care bill that President Obama signed into law in March. How will it affect people without insurance, on Medicare, on expensive medications? Where does the Arthritis Foundation stand?

Amy Melnick, Arthritis Foundation Vice President of Public Policy, provides answers to your questions about Health Reform and the Arthritis Foundation.

 Q: As way of introduction, can you tell us something about your role and the Arthritis Foundation’s Office of Public Policy & Advocacy?

A: I have the honor, along with a small and dedicated staff team in Washington D.C., of representing people with arthritis before Congress, the Administration, industry and other charitable non-profits. We work with advocates – people with arthritis from all across America who want to fight this disease by letting Congress know that more needs to be done for people with arthritis. We are here in the nation’s Capitol, walking the halls of Congress and working with the federal government and the patient advocacy community to raise awareness of the devastating impacts of arthritis and how public policy can improve the lives of people with arthritis.

Whether it is increasing the federal investment for arthritis research and prevention or trying the improve access to care for people with arthritis, the Arthritis Foundation is represented in Washington D.C. However, our arthritis advocates are the real heroes – they communicate to their members of Congress via e-mail, in their hometowns and even sometimes by coming to Washington to raise awareness that arthritis is a serious disease that requires serious attention. If Congress doesn’t hear from you – the person impacted by arthritis, Congress will not act.

Learn More About Health Care Reform and How it Impacts People with Arthritis

• In general, what does this Health Reform legislation do for people with arthritis?
• What have you heard from people with arthritis?  Why was health care reform necessary? 
• How does Health Reform legislation address those needs?
• What about people with arthritis on Medicare?  What is the impact on them?
• What about those people who don’t have insurance?
• Overall, what should people know about this bill?
• What are some things in the bill that have not received a lot of attention that people with arthritis may care about? 
• How does the passage of Health Reform legislation affect the Arthritis Act? What, if anything, will change?
• Now that health care reform is passed, what are the priorities of the AF related to health care coverage?
• Does this legislation solve all health care challenges? 
• How can people stay in touch with these issues and ensure that arthritis and people with arthritis continue to be represented as the implementation of the law ensues?
  

In general, what does this Health Reform legislation do for people with arthritis?
As the only national advocacy organization for people with arthritis, the Arthritis Foundation is very pleased that the health care reform legislation passed by Congress and signed into law by President Obama last week has a number of provisions that address the health concerns of people with arthritis. For example, annual and lifetime caps on insurance coverage have been eliminated and the legislation will eliminate exclusion of pre-existing conditions.  An ArthritisToday.org article highlights the provisions that will go into effect this year.

The Arthritis Foundation worked hard to ensure that all bills under consideration contained the strongest provisions possible to address the particular challenges and concerns of the more than 46 million people including 300,000 children with arthritis.

It’s a complex bill, but there are clearly things in it that address what the issues we’ve heard that concern the arthritis community.

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What have you heard from people with arthritis?  Why was health care reform necessary? 
For a few years now, the Arthritis Foundation has heard from people with arthritis that is was getting harder and harder to get, keep and maintain “good” health insurance once their arthritis was diagnosed or they needed expensive medications that kept them active and mobile. Learn more about what people want from health care reform.

We also heard from young adults and parents of kids with juvenile arthritis (JA) that they faced enormous discrimination when trying to keep or purchase insurance. This type of “discrimination” was forcing many people with arthritis to delay or stop treatment or therapy because they simply could not afford it.

As a result, the Foundation knew some sort of reform was needed. We spent the early part of 2009 working with volunteers with many forms of arthritis, from different parts of the country to develop the Arthritis Foundation Principles of Health Care Reform.  These principles outlined the priorities of the Arthritis Foundation and people with arthritis related to health care coverage, such as eliminating the insurance companies’ ability to deny coverage for people with pre-existing conditions and ensuring reasonable copayments for medications, such as biologics.

These principles were submitted to Congress and the Administration as legislation was being considered. Arthritis advocates also came to Washington last year to discuss their health care insurance challenges with their members of Congress.


How does Health Reform legislation address those needs?
Health care reform does not make all of the challenges and problems people with arthritis face with health care coverage go away.  But, for many people with arthritis, access to insurance will improve, for example, for children with arthritis, discrimination is eliminated within six months of enactment.  This is huge for families with children with any form of juvenile arthritis.

Speaking of discrimination, there are other provisions such as lifting the lifetime limit on health insurance coverage.  We know that for people diagnosed with rheumatoid arthritis at a young age – those limits could kick in at some point before Medicare eligibility (age 65 or legally disabled).  These limits on lifetime coverage are now eliminated six months after enactment. 

Again, when arthritis strikes at a young age it can be devastating to a family.  Getting coverage for someone over the age of 21 has been quite a challenge.  The legislation now extends coverage for young people up to the age of 26 and enables them to stay on their parents insurance.

For adults with arthritis, discrimination based on the pre-existing condition of arthritis will be outlawed starting in 2014. 

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What about people with arthritis on Medicare?  What is the impact on them?
We know prescription costs are a larger and larger portion of people’s health care expenses, especially for people with arthritis.  There are several major ways that this landmark legislation will improve Medicare.

First, the legislation eliminates the Part D coverage gap by 2020, decreasing the share of costs paid by consumers while in the so-called “doughnut hole” until it reaches the standard 25 percent.  People with Medicare who reach the coverage gap in 2010 will immediately benefit from the legislation, receiving a $250 rebate. In 2011, people with Medicare who enter the coverage gap will receive a 50 percent discount on brand-name drugs.

Furthermore, the final reconciliation bill passed by the House of Representatives limits the amount of money people with Medicare must spend to reach Part D catastrophic coverage. This is an important improvement that will help further curb burdensome costs that make it difficult for older Americans to afford their drugs.  Over 3.4 million people with Medicare  -- approximately 33% of them have arthritis -- hit the coverage gap each year and struggle to pay the full price of their medicines.

What about those people who don’t have insurance?
There are a number of key provisions that will help people without insurance and provisions for small businesses to make it more affordable to offer coverage.  The most immediate change involves the creation of a high risk pool that will provide insurance coverage to adults who are uninsured because of a pre-existing condition. In addition, small businesses with 25 or fewer employees will receive tax credits up to 35 percent to help provide insurance coverage. And by 2014, small businesses will receive tax credits to cover 50 percent of premiums.

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Overall, what should people know about this bill?
People with arthritis should know there are real benefits for them that will go into effect this year in 2010.

However, the majority of the bills provisions are enacted over time and into the decade.  The Kaiser Family Foundation offers a detailed timeline of when various provisions will take effect.

Also, as with any legislation there will be many implementation challenges and opportunities during the year to weigh in with the government about how this legislation will actually work.  These rules and regulations will take time to write and the Arthritis Foundation is committed to being at the table while these rules are being written. 

What are some things in the bill that have not received a lot of attention that people with arthritis may care about? 
Two issues that have remained largely under the radar screen but have been very central to the Arthritis Foundation’s advocacy agenda have been access to providers and access to less costly medications. 

The Arthritis Foundation has been championing through the Arthritis Prevention, Control and Cure Act, a solution to the shortage of pediatric rheumatologists in this country.  There are 9 states in the U.S. without a single pediatric rheumatologist.  This presents a major issue of access to appropriate care for children with arthritis.  A delayed diagnosis and treatment plan for juvenile arthritis can lead joint damage and lead to disability for kids.  Congress recognized this and, as part of health care reform, included a new pediatric loan repayment program for pediatric sub-specialists to assist in debt relief and encourage physicians to enter into fields such as pediatric rheumatology. The Arthritis Foundation will be following this issue closely during the implementation stages to ensure that pediatric rheumatology is addresses quickly through this new program. 

The second issue in this legislation that affects people with arthritis directly is that now, for the first time, the U.S. Food and Drug Administration (FDA) is given the authority to write the rules for generic manufacturers to produce “generic” biologics.   What this means is that consumers may have access for the first time to “generic” biologics.  Biologics are very complex products to reproduce but now the FDA will move forward and write these complex scientific rules for drug manufacturers.  This has the potential to lower the cost of these life-altering medications for people with arthritis. 

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How does the passage of Health Reform legislation affect the Arthritis Act? What, if anything, will change?
The Arthritis Foundation is ready to re-focus on passing the Arthritis Prevention Control and Cure Act (H.R. 1210/S. 984) after many years of advocating for its passage.  One major component of the Arthritis bill has been incorporated into health care reform – the loan repayment program for pediatric specialists.  We are looking forward to working with our Congressional sponsors, Reps. Anna Eshoo (D-CA) and Fred Upton (R-MI) and Sens. Barbara Boxer (D-CA) and Kitt Bond (R-MO) to revise this bill and move it through the legislative process.  If passed, this will be the first arthritis specific legislation to pass Congress in over 35 years. 

Some Arthritis Today readers may recall the legislation did pass in U.S. House of Representatives in the last Congress; however it did not make it through the Senate. This year, we want the Arthritis Act to pass both the House and Senate and be signed into law by President Obama!

Now that health care reform is passed, what are the priorities of the AF related to health care coverage?
The Arthritis Foundation will be focusing on educating people with arthritis about the changes this legislation offers and helping people understand their options. We recognize that people with arthritis will continue to face challenges keeping and paying for health care.  That is why we set up a one stop shopping site for health care information and resources. 

We will also be focusing on the many implementation challenges and opportunities that health care reform will bring.  The legislation has a number of provisions related to chronic disease prevention and health promotion.  We want to ensure that when the Secretary of Health and Human Services establishes a new National Prevention and Health Promotion Strategy to set goals and objectives for improving health in this nation that arthritis be considered a national health challenge that must be addressed. 

The Arthritis Foundation will be paying special attention to this next phase – the implementation phase.  For example, we have heard from people with arthritis that getting their medications approved for coverage and having reasonable co-payments is a big issue. 

We were pleased to see that a new, independent appeals process provision was included in the reform legislation, which ensures that consumers will have access to both internal and external appeals process to appeal decisions by their insurance carriers. However – we do not yet understand how this appeals process will work and if it will directly benefit people with arthritis and their ability to access arthritis specific treatments.   

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Does this legislation solve all health care challenges? 
No, it certainly does not. No legislation is perfect, and there were many health care challenges that were not addressed in this one. One issue that was clearly not addressed for people with arthritis is the rising monthly costs of out of pocket expenses – especially for example, co-payments for prescription medicines.

The final legislation includes a maximum yearly out-of-pocket limit for a family of $10,000, which is on top of what families pay in monthly insurance premiums. A family facing arthritis with its high cost of medications and potential for surgeries, such as joint replacements, could easily be financially crushed by medical costs.

The Arthritis Foundation and other organizations were looking for some sort of financial relief from the growing monthly out of pocket costs. We are  working with Sen. Jay Rockefeller (D-WV) and Rep. Hank Johnson (D-GA) on legislation, the Affordable Access to Prescription Medications Act of 2009 (H.R. 3799, S. 1630).

This important legislation would ensure that people have access to prescription drugs necessary to maintain their health and independence by placing a limit on monthly out of pocket expenses for medication. This legislation would provide vital assistance to all Americans, whether covered by private insurance or Medicare Part D by establishing a $200 cap on the amount a person can be charged for any one prescription for a one-month supply; and limiting to $500 the total amount a person can be charged for all prescriptions taken in one month.

We are also partnering with the Multiple Sclerosis Society and the Lupus Foundation on this initiative because we recognize that our constituents face the same challenges with paying for medications and there is always strength in numbers. You can lend your support for this legislation.

How can people stay in touch with these issues and ensure that arthritis and people with arthritis continue to be represented as the implementation of the law ensues?

A: The best way to stay informed about these issues is to sign up to become an e-advocate at http://capwiz.com/arthritis/mlm/. It’s really quite easy to sign up to be an e-advocate. You give us your e-mail address and zip code, and we send regular updates and action alerts regarding improving access to care for people with arthritis, federal funding for arthritis research and prevention and information on the Arthritis Prevention Control and Cure Act. Being an advocate is so easy and so important; in just five minutes you can connect to your elected officials and let them know they need to focus on arthritis. 

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