- Legislation Affecting You
- Disability & Soc. Sec.
- Patient Advocacy
- Contact the Action Desk
- Volunteer at PHCentral
- Social Security Claims—What's in YOUR file?
- Alphabet Soup Spelled Out-(Where your disability c
- What's age got to do with it?
- Work and Social Security: (Yes! You can!)
- Legislation You Should Know About: DOT Mandate
- Social Security Claims—Making Your Efforts
Legislation Affecting You
It's here!!! The new PH bill - HR 1810 and Senate Bill S775
It's that time again! The new bill for Pulmonary Hypertension Research - the Tom Lantos PH Research and Education Act of 2011 - is out and it is important for you all to make your voices heard. We urge you to take an active roll in advocating for this bill by calling, writing or better yet, making an appointment to meet with your representative and senator. This is the third attempt to pass a bill for Pulmonary Hypertension .
The House Bill- allocate funds for: research, awareness and the development of a database for the purpose of identifying individuals at risk of developing this condition, basic and clinical research in the cause, diagnosis, early detection, prevention and treatment of this disease as well as training programs for scientists and health professionals.
The Senate Bill -To direct the Secretary of Health and Human Services to encourage research and carry out an educational campaign with respect to pulmonary hypertension,and for other purposes.
For More Information: The current bill are concise and easy to understand; you should take a few minutes to read the text. It’s easy to find. Simply go to the Library of Congress link below, type in Pulmonary Hypertension Research or HR 1810 or S775
Outcomes of Recent Legislation
New Rules for How Medicare Pays Suppliers for Oxygen Equipment
Changes in law require Medicare to change the way it pays suppliers for oxygen equipment and supplies. You will still be able to get your oxygen equipment. However, you should know about the new rules that start January 1, 2009.
How does the recent law change the way Medicare pays for oxygen equipment and related supplies?
Previously, the law stated that you would own the oxygen equipment after you rented it for 36 months. Under the new law, the rental payments will end after 36 months, but the supplier continues to own the equipment. The new law then requires your supplier to provide the oxygen equipment and related supplies for 2 additional years (5 years total), as long as oxygen is still medically necessary.
To learn more about what this means to you, go to: CENTERS FOR MEDICARE & MEDICAID SERVICES.
Genetic Information Nondiscrimination Act of 2007 (S358)
The purpose of this legislation is to protect individuals from discrimination in health insurance and employment on the basis of genetic information. Establishing these protections will allay concerns about the potential for discrimination and encourage individuals to participate in genetic research and to take advantage of genetic testing, new technologies, and new therapies. The legislation will provide substantive protections to those individuals who may suffer from actual genetic discrimination now and in the future. These steps are essential to fulfilling the promise of the human genome project. Read more about S 358 by going to: http://thomas.loc.gov
This became Law May 21, 2008
Advocacy, Contacts and Other Useful Resources
Advocating for PH – What You Can Do and Why It’s Important
Don’t be afraid to visit your local representatives / senators. Part of their job is to listen to their constituents, to learn about the issues that are important in their jurisdiction and to vote the will of the people they represent. A visit – perhaps by a small group of PH patients from your support group (4 is a good size group) – would go a long way in advancing the PH cause.
As you may know, politicians are usually in their home territory during the month of August, mid November through most if not all of December, but that does not mean you have to wait until then to call or make your appointment to visit them. Every congressperson has local staff (aides) who can meet with you.
During your visit be sure to tell them your personal story and also how important early detection is. In the end, you want them to co-sponsor this bill. If you would prefer to call, ask to speak to the Legislative Aide. Tell the aide you want to see an important bill pass and you are calling to urge co-sponsorship.
Note: You might assume all politicians know about all the bills under review in any given session. That is not true. If they are not on committes where these bills are discussed, they might not have a clue. This is why it is so important to bring a bill to their attention and to explain why it's important that it pass.
Write to Congress:
Search the Library of Congress for current or past legislation, including the bills listed above.
Note: You may search the Library of Congress by bill number or by entering keywords. To narrow down your search, also specify the congressional session number if you have it. This is a number something like 110, 111, 112, etc. Every two years the number increases by one. For 2009/2010, the congress is in its 111th session.
Other Useful Resources:
Read "How Our Laws Are Made" at the Library of Congress Website.
In The News
- September 26, 2014
- Ontarians Celebrate Overdue Provincial Access to Only IPF Treatment
- March 29, 2014
- PCORI’s Research Will Answer Patients’ Real-World Questions
- March 16, 2014
- Law Would Grant 'Safe Harbor' to Docs Who Follow Guidelines
- February 9, 2014
- New Ruling Means Patients Can Access Their Own Lab Results
- March 14, 2013
- US FTC joins court battle over drug samples
- November 29, 2012
- Disability Benefits: Know Your Rights
- October 5, 2012
- Obama, Romney debate sheds little light on healthcare issues
- October 5, 2012
- Study: Regulations Meant to Lower Health Care Costs Don't
- October 4, 2012
- Report Urges FDA to Approve More Drugs
- August 23, 2012
- Pfizer Asks End to Fen-Phen Suits Linked to Lung Ailment
- August 21, 2012
- Health Law Gives Medicare Fraud Fighters New Weapons
- August 19, 2012
- The Most Powerful Health Care Group You’ve Never Heard Of
- August 14, 2012
- Rapidly progressive pulmonary venoocclusive disease in young women taking oral contraceptives.
- July 15, 2012
- U.S. Healthcare by the Numbers
- July 12, 2012
- How one model state is implementing healthcare reform
- July 7, 2012
- 1-10: What's Really in the Affordable Care Act
- June 22, 2012
- What's at Stake for Your Insurance as Supreme Court Weighs Health Reform?
- May 30, 2012
- FDA Issues Complete Response Letter for 800mg PREZISTA® (darunavir) Tablet
- May 9, 2012
- Indian drug regulator accused of malpractice
- March 30, 2012
- The Supreme Court will decide on the health-care law soon. It will tell you later.
- March 27, 2012
- Justices weigh mandate to buy health insurance
- February 16, 2012
- Millions Of Californians Taking Advantage Of Health Care Reform
- January 25, 2012
- Republicans’ agenda for repeal of Affordable Care Act
- December 13, 2011
- Ready or Not, Reform Under Way
- October 30, 2011
- Big Medicare Pay Cut Would Shut Physician Doors to Patients
- December 30, 2010
- The U.S. Health-Care Law Provisions Taking Effect in 2011.