Anti-ACA Litigation, Extenders Act and Rare Disease Day 2011

Hi! You haven’t heard from me in a while… I know, I know, I miss you too! That’s why I wrote tonight’s blog post for you; to share an update on all that has been going on. And to wish you HAPPY HOLIDAYS (in case I don’t get around to another post until after the New Year).

Anti- Affordable Care Act Litigation:

Last week, New Jersey Federal District Judge Susan D. Wigenton, appointed to the bench by George W. Bush, issued the dismissal in her decision on New Jersey Physicians Inc. v. Obama, No. 2:10-cv-01489. Her decision found the plaintiffs lacked standing to raise their challenges.  The case was immediately appealed to the 3rd Circuit Court of Appeals.

Five other notable reform challenges have been dismissed (joining dismissals occurring in the E.D. Mich.; E.D. Tenn.; W.D. Va.; and S.D. Cal.).  The Michigan (Thomas More Law Center v.  Obama), Virginia (Liberty Univ. v. Geithner) and California (Baldwin v. Sebelius) cases have been appealed to the 6th, 4th, and 9th Circuit Courts of Appeals, respectively.  As far as I know, fifteen judges have now heard cases challenging the Affordable Care Act, and 14 of those cases have been dismissed.

Unfortunately, as you have likely heard, this week Virginia Federal District Judge Henry Hudson ruled that a provision in the Affordable Care Act was unconstitutional. In the case of Virginia ex rel. Cuccinelli v. Sebelius, Judge Hudson’s 42 page decision argued that while the broader health reform law shall remain intact, the requirement that nearly all Americans either carry insurance or pay slightly more income taxes is unconstitutional (that the power to enact the mandate is not within power granted under the Commerce Clause, the Tax Clause, and the Necessary and Proper Clause). In my opinion, this will probably be the case that makes it to the Supreme Court. This decision, however, places him on a collision course with the views of one of the Supreme Court’s most conservative members: Justice Antonin Scalia. Justice Scalia has ruled that “Congress ‘possesses every power needed’ to make its laws effective. Instead, Hudson simply waves this rule away with a single cryptic statement that the Affordable Care Act doesn’t fit within ‘the letter and spirit of the Constitution.’” A mandate that all US citizens purchase health insurance is essential towards realizing affordable care. Without a mandate to purchase insurance, and a tax on those who choose not to, “the letter and spirit” of the Affordable Care Act is not possible. “Insurance rates will dramatically increase because people will wait to get health insurance until they are sick.”

US District Judge Roger Vinson has begun formally examining the constitutionality of the health care reform law in Pensacola, Florida. Today, Judge Vinson heard oral arguments brought by 20 states (Alabama, Alaska, Arizona, Colorado, Florida, Georgia, Idaho, Indiana, Louisiana, Michigan, Mississippi, Nebraska, Nevada, North Dakota, Pennsylvania, South Carolina, South Dakota, Texas, Utah, and Washington). The 20 states, along with two private citizens and the National Federation of Independent Business, filed the suit on March 23, 2010, the day the ACA was signed into law by President Obama. As in the Virginia case, the suit alleges that the “individual mandate” in the law, which requires all citizens to get health insurance or pay a penalty, exceeds Congress’ authority under the Commerce Clause.

Why the Individual Mandate is Important for People With Complex Illness:

The Plasma Users Coalition produced a two-pager, “Principles for Health Care Reform and the Rare Disease Community”. That document portrays a small slice of the costs of care for people with complex illness:

The patients we represent have rare disorders and need life-long access to expensive, life-saving treatments.  For example, the average annual cost of treating an adult male with hemophilia is $300,000 per year; the cost of treatment for an individual with alpha-1 antitrypsin deficiency is approximately $150,000 per year; and persons with Primary Immune Deficiency diseases (PIDD) who infuse or inject their therapy every four weeks costs on average $35,000 to  $50,000 per year to treat.  Individuals managing acute neurological disorders such as Guillan  Barré Syndrome or Chronic Inflammatory Demyelinating Polyneuropathy, who also infuse a plasma therapy on a regular basis, cost approximately $30,000 to $60,000 per year.

For too long, too many Americans with pre-existing conditions were left out of the health insurance marketplace, while others were cast out once they reached annual or lifetime expense limits. Health insurance companies could charge these Americans more for insurance or simply refuse to cover them. However, starting September 23, 2010 the new law makes it illegal for insurance companies to discriminate against children under age 19 with preexisting conditions. In 2014, discriminating against anyone with a pre-existing condition will be illegal. In an effort to bridge the gap between today and 2014, the health reform law created a temporary Pre-Existing Condition Insurance Plan. This plan offers coverage to uninsured Americans who have been uninsured for at least six months and unable to obtain health coverage because of a pre-existing health condition like cancer, diabetes or lupus. Coverage will be available at the same rate as it is for an average person who does not have such a condition and the program is entirely funded by the federal government.  The program is temporary and will last until 2014 when discriminating against anyone with a pre-existing condition will be illegal.

In order to cultivate affordable insurance options for people with complex illness, including “pre-existing conditions” or costly diagnoses such as hemophilia as illustrated above, ALL Americans need to be in the insurance pool. The system would not work if it waited for people to get sick before participating. Public health is a shared responsibility, and we all need to participate if we want the system to work.

Medicare and Medicaid Extenders Act of 2010:

Many of you who follow my work understand that I am often talking about the relationship between primary care and complex illness. My non-profit focuses on providing support for people with rare disorders and for patients of community health centers. Today, President Obama signed into law the Medicare and Medicaid Extenders Act of 2010, which impacts both of those communities. The law delays for one year a reduction in Medicare provider reimbursement that would otherwise have taken effect on January 1, 2011. But the law did several other things as well…

Orphan Drug Coverage Under the 340B Program

Most of the people I work with during the day are familiar with the 340B program available to Federally Qualified Health Centers (FQHC) and other entities. I began my career with two different FQHC’s in New York and initially came to Washington, DC for a job with the National Association of Community Health Centers (NACHC), a non-profit association who represents the FQHC network of more than 1200 community health centers who serve 20 million patients each year.

The 340B Drug Pricing Program resulted from enactment of Public Law 102-585, which is codified as Section 340B of the Public Health Service Act.  The 340B Drug Discount Program is managed by the Health Resources and Services Administration (HRSA) Office of Pharmacy Affairs (OPA).  Section 340B limits the cost of covered outpatient drugs to certain federal grantees, federally-qualified health center look-alikes and qualified disproportionate share hospitals. Participation in the Program results in significant savings estimated to be 20% to 50% on the cost of pharmaceuticals for safety-net providers.  The purpose of the 340B Program is to enable these entities to stretch scarce federal resources, reaching more eligible patients and providing more comprehensive services.

Section 2302 (4) of the Health Care and Education and Reconciliation Act of 2010 amended Section 340B of the Public Health Service Act which excludes orphan drugs for certain covered entities. The Extenders Act included a provision which made a technical correction to ensure the continued inclusion of orphan drugs in the definition of covered outpatient drugs with respect to children’s hospitals under the 340B drug discount program. Children’s Hospitals and Clinics of Minnesota actually released a press release today applauding Senator Al Franken’s leadership in saving them the $1.5 million more per year they would have had to pay without the fix, for drugs used to treat a wide variety of conditions such as Rheumatoid Arthritis, Crohn’s Disease, Cystic Fibrosis, immune deficiency, and various types of cancer.

Rare Disease Day 2011:

February 28th 2011 will mark the fourth International Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 25 countries. On that day hundreds of patient organisations from more than 40 countries worldwide will be organising awareness-raising activities and converging around the slogan “Rare but Equal”.

This is the third annual observance of Rare Disease Day US. The growth in just a few short years has been remarkable, but we look to everyone to continue that momentum to make this year’s celebration the most successful yet. Big picture goals this year include:

  • Creating a video encyclopedia of rare diseases
  • Extensive media coverage
  • Social networking blitz
  • Creating a Rare Disease Physician Database
  • Sharing patient stories, videos, photos, and blogs
  • Joining hands with others worldwide

Every year, Rare Disease Day has a specific theme worldwide. This year’s theme is “Rare but Equal” which will highlight “Rare Diseases and Health Inequalities.” You can read more about this theme on the global Rare Disease Day website.

For more information visit:

http://www.rarediseaseday.org/

http://rarediseaseday.us/

MarbleRoad is working on a few ideas for Rare Disease Day 2011 – do you have any suggestions?? Let us know in the comments!

Ok, I think that’s all for tonight… But it’s plenty enough!

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~ by marbleroad on December 17, 2010.

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