Go to www.PHCentral.org - Action Central - Legislation You Should Know About
Or to www.PHAssociation - Advocacy - Current Issues
*To contact your Federal Senators go to:                             http://www.senate.gov/
*To contact your Federal Representative go to:               http://www.house.gov/
Library of Congress for current and past bills:         http://thomas.loc.gov/                                                  
*These address will lead you to information not only about the Politicians but about items and issues they are currently working on                                                                * * * * * * * * * * * * * * * * * 
What is PHAbout UsMeeting InfoWelcome to Merle's WorldMore About UsNews & ViewsDiet, Nutrition & ExerciseHelpful Hints etc
More Helpful HintsSpecial Events 4 CAPHSPics of Walk and RollMore picturesCaregiversThings that make you Previous MeetingsMeetings Previous Years

Other sites of interest:         www.ohio.gov/  
  Click on Judical at Ohio.gov - Ohio Supreme Court
  Click on Legislative at Ohio.gov - Senators or Representatives
            This is also a good site www.dsf.health.state.pa.us/health                                                                 
Americans with Disability Act      Click here
The U.S. Department of Justice provides information about the Americans with Disabilities Act (ADA) through a toll-free ADA Information Line. This service permits businesses, State and local governments, or others to call and ask questions about general or specific ADA requirements including questions about the ADA Standards for Accessible Design.ADA specialists are available Monday through Friday from 9:30 AM until 5:30 PM (eastern time) except on Thursday when the hours are 12:30 PM until 5:30 PM.Spanish language service is also available.For general ADA information, answers to specific technical questions, free ADA materials, or information about filing a complaint, call:    800 - 514 - 0301 (voice)
                                                    800 - 514 - 0383 (TTY)       
Merle Reeseman
Support Group 
More helpful links on other pages of this site. If you have a question or concern, let me know.                   
Do I need a living will if I have a last will and testament?Yes, your last will and testament deals with matters of property. Your living will deals with your health and personal care. Your last will and testament only kicks in after you die. Living wills are used during life and may be modified by the declarant whenever circumstances change. How does a living will work?Through a properly drafted legal document, you name someone to carry out your wishes for your medical care in the event that you are unable to make those decisions yourself. Again, you can be very specific as to what treatments you would agree to and which ones you don't want. Having your wishes on paper can take the pressure off family members to make difficult decisions regarding your careThe document can be drafted by a lawyer – or you could do it yourself, as long as you follow all the steps that make such documents legal in your state of residence. It's also a good idea to review your living will with your doctor. The doctor can ensure that you have understood the choices in the living will and that the instruction directive is suitable for your own health situation. Like a regular will, it's a good idea to update a living will from time to time. Advances in medical science could make today's heroic measures tomorrow's routine procedures.  
Living wills focus on life-sustaining treatment and other end-of-life care.
A living will is not operative (i.e., in effect) unless the patient is:
 
  • Incompetent and
  • Permanently unconscious or has an end-stage medical condition.
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S 358 GINA the Genetic Information Nondiscrimination Act .  It has passed in the House and in the Senate - PRESIDENT BUSH HAS SIGNED IT!!!! IT'LAW
This page will have changes that are happening in the Political, Medical and Insurance scene.  If you know or have any questions or concerns, send them on.Write/send info to Merle at:  OHPA.PHER@gmail.com
We are now waiting as the PH bill HR 3520 did not pass~ The Pulmonary Hypertension Research and Diagnosis Act of 2015
 When the new bill comes out, call your Representative and ask him/her to co-sponsor this very important bill.
This also applies to the Senate bill, when it does come out
ask your politicians to co-sponsor 
CALL TO ACTION 
  The bill for Pulmonary Hypertension Research and Education will be ready soon and it is important for you to make an appointment to visit or call your Federal Representative and Federal Senators.  
  If you would like me to go with you, let me know and if my schedule permits, I will meet you at their office.
Some talking points:
1.If you or someone you know suffers from pulmonary hypertension, then you have a powerful story to tell. Tell your Members of Congress about the need for more PH research and urge them to co-sponsor legislation that will improve diagnosis and raise public awareness by telling them about The Pulmonary Hypertension Research and Early Diagnosis Act of 2015 - it will be out soon.
2.This bill is different from our earlier bills in a few key ways. For one, it is budget neutral – it is focused on results without asking for new money.

Spread the word! Encourage your friends and families to get involved! Think how strong we’ll sound if each person in the PH community got 5 people to pledge to call their Members of Congress! 
Some talking notes when you call your Congressperson or Senator – remember if they are not at their office, ask for their Legislative or Health Aide; they will in turn relay your request for co-sponsorship
Calling the Washington office would be preferred but calling the local office will work. You can get that information in the government pages of your phone book or go to:
*To contact your Federal Senators go to:  http://www.senate.gov/
*To contact your Federal Representative go to:  http://www.house.gov/  
If you don’t know who your politician is, type in your zip code (+ 4 digits).

This is what the bill will do - 
Fifteen years ago there were no treatments for PH, and diagnosis took an average of 2.8 years. Today, even with twelve treatments available, diagnosis still takes an average of 2.8 years and without treatment 50% of those may die within that time frame. The Pulmonary Hypertension Research and Diagnosis Act seeks to change that. This revised and updated PH bill is designed to make an impact in the current legislative climate. One email or call from you can help it become law.
The bill calls for the creation of a committee within the federal government focused on improving health outcomes for individuals living with pulmonary hypertension. The group would bring together representatives of several federal agencies working on PH to:
• Advance the full spectrum of PH research from basic science to clinical trials
• Increase early and accurate diagnosis of PH
• Educate medical professionals and the public
The Secretary in decisions relating to pulmonary hypertension shall; develop and annually update a comprehensive strategic plan to cooperatively improve health outcomes for pulmonary hypertension patients which includes recommendations:
to improve professional education concerning accurate diagnosis and appropriate intervention for health care providers; 
to improve the transplantation criteria and process concerning lung and heart-lung transplants for pulmonary hypertension patients;
to improve public awareness and recognition of pulmonary hypertension;
to improve health care delivery and promote early and accurate diagnosis for pulmonary hypertension patients; and
to systematically advance the full spectrum of biomedical research, including recommendations for basic, translational, clinical, and including pediatric research, and research training and career development

Briefly tell your story – how long did it take you to be diagnosed. What was your life like before, what is it like now.
 
The Medicare Rights Center will be hosting monthly free web seminars on important Medicare topics. The monthly seminars will be held on the second Thursday of each month.  
 
To register for these seminars, please visit http://www.medicarerights.org/webinars.html 
 
This is something to really make you wonder about what is going on.  Uncle Jay explains the news
HR 6331 passed -- it is law and you need to read all about it.  Medicare Improvements for Patients and Providers Act of 2008 Read it at the Library of congress
Ending the Medicare Disability Waiting Period Act of 2009 – HR 1708 I ~ Amends title II (Old Age, Survivors and Disability Insurance) (OASDI) of the Social Security Act (SSA) to: (1) phase out the waiting period for disabled individuals to become eligible for Medicare benefits under SSA title XVIII (Medicare); and (2) eliminate the waiting period for individuals with life-threatening conditions to become eligible for such benefits. Directs the Secretary of Health and Human Services to request the Institute of Medicine of the National Academy of Sciences to study the range of disability conditions that can be delayed or prevented if individuals receive access to health care services and coverage before a condition reaches disability levels.Purpose: A bill to amend title II of the Social Security Act to phase out the 24-month waiting period for disabled individuals to become eligible for Medicare benefits, to eliminate the waiting period for individuals with life-threatening conditions, and for other purposes.
Hopefully an updated version will be included with the new Health Care Reform Bill
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What do I say when I contact my politician: (and please call between 9am & 5pm) Ask for the Legislative / Health Aide if your politician isn't there.
1. Identify yourself as a constituent and ask to speak with your Representative, Senator or their Legislative / Health Aide.
2. Introduce yourself and BRIEFLY explain what pulmonary hypertension is and how it impacts you and your family. (i.e. PH is high blood pressure in the vessels between the heart and the lungs. It is deadly, and incurable, we want and need your help to change that.)
3. Emphasize the importance of research to find new and better treatments, and eventually a cure, for PH.
4. Give your politician or their aide your contact information and ask to be kept informed of the legislator’s actions on your request.