36 petitions

Started 4 months ago

Petition to U.S. House of Representatives, U.S. Senate, President of the United States, United States Supreme Court

The Medicaid Divide -- Support the DIA!

Since the dawn of our country, we have sought to ensure freedom of movement as a fundamental right. As early as the Declaration of Independence, our nation regarded this freedom as crucial towards maintaining our democracy. However, for people living with disabilities, this freedom of mobility is restricted at present by bureaucracy and ableist health policies.  One of the best and most important resources available to people with disabilities like myself is our country’s Medicaid system. While Medicaid is critical to my survival and the survival of countless others living with a disability, there are big ways in which the administration of Medicaid needs to be improved and expanded to consistently meet the needs of disabled citizens.  Our current Medicaid system is funded and administered on a state-by-state basis. What this means is that certain states like New York offer comprehensive coverage and allow people like myself to live with independently and dignity, while in many other states Medicaid is underfunded & unable to meet these basic needs.  In 2005, I was diagnosed with multiple sclerosis in New York. It just so happened that I was located in the state that was ranked #1 for support services for people with disabilities on Medicaid. I quickly learned that this was not the case for everyone when, years later, my son Jase’s mother moved him from New York to Texas. When I went to Texas to explore their healthcare services, I learned that they are ranked the lowest for Medicaid services for their disabled population. This means that I am unable to live independently in Texas and would be confined to a state-run nursing home. Studies have repeatedly shown the adverse psychological and physical effects of living in a nursing home. Therefore, the only freedom I have in this situation is the choice between catalyzing the effects of my condition in a nursing home so I can see my son, or living hours apart. My story may be tragic, but it is not unique. These inconsistencies split up our families, impede us from employment opportunities, and deprive us of our right to the pursuit of happiness. The effects of this can be seen by talking to any person with a disability that has attempted to move or travel across state lines, and calls into question the freedom of movement entitled to our citizens as a basic and fundamental right. In essence, our current system has created the situation that people with disabilities are trapped within their state of residency. Finally, a bill is in Congress that will do something about this if passed.  The Disability Integration Act (DIA) secures and expands the rights outlined in the seminal Americans with Disabilities Act (ADA), to say that when people with disabilities are forced into institutionalization, they lose many of their basic civil rights.  Direct from the website of the bill: ‘The Disability Integration Act is bipartisan, bicameral legislation to ensure that disabled Americans have a right to live and receive services in their own homes.’  It states that all people eligible for Long Term Support Services have a right to make a meaningful choice in how they receive these support services. It also puts responsibility on states to provide community-based solutions for Long Term Support Services,  rather than going straight to institutionalization.  Every day that our current state of affairs continues is another day that I cannot be with my son. I will do whatever it takes to bring him back into my life, and regardless of the outcome, I will not give up. I might not live long enough to see this policy changed. However, I have faith and take comfort in the fact that the next generation of disabled activists will pick up the mantle. Though my health is deteriorating, I will continue to fight for myself, my community, and for Jase so that hopefully I will be among the last generation that lived with this grave, destructive injustice. Please join me in signing your support for a bill that will finally make a difference in righting much of what is going on in my life & the lives of so many others.  

Jason DaSilva
2,218 supporters
Started 4 months ago

Petition to Medicare, United States Department of Health and Human Services

End Gag Orders that Force People to Pay More for Prescription Drugs

What if you went to pick up your prescriptions at the drug store, and the pharmacist failed to tell you that you could get your medication for $10, $20 or sometimes even $100+ cheaper? This happens a lot more frequently then people think -- it might have even happened to you. And the reason? Gag orders that pharmacy benefit companies place on pharmacists that bind them from telling patients that they could get their drugs for cheaper prices. The President and a host of bipartisan lawmakers have said this practice needs to end. Yet the Centers for Medicare and Medicaid Services stopped short of requiring that these gag orders stop immediately. In the meantime, thousands of people could be paying way more for their drugs because of these gag orders. It's time to send a message to big pharma and demand that Medicare and Medicaid put in place policies that prohibit and end these unjust gag orders than punish people in need of medication. There's already movement on this issue -- several states have already moved to ban these gag orders and legislation has even been introduced in the U.S. Senate that would end the practice of big pharma placing gag orders on pharmacists. But big pharma is fighting back -- even suing to prevent a North Dakota bill that bans gag orders from becoming law. It's not right -- pharmacists shouldn't be forced to lie to patients about drug prices by greedy pharmacy benefit corporations, and patients shouldn't have to shell out more money than they have to for already expensive drugs. Tell the Centers for Medicare and Medicaid Services to not just pay lip service to condemning these gag orders, but to enacting real policy that ends their practice entirely in the health care industry.

Kevin Grossman
76,944 supporters
Update posted 5 months ago

Petition to Kevin Brady, U.S. House of Representatives, Mike Enzi, Bernie Sanders


I am one of about 800,000 people in the U.S. who suffer from  multiple sclerosis, a disabling progressive disease which affects the central nervous system.  Other rare diseases include ALS (Lou Gehrig's Disease), muscular dystrophy, lupus and sarcoidosis.  I lost my career to MS, as I have become totally disabled.   There is no cure for MS, but the disease can be managed.  There are currently 13 or so FDA-recognized disease modifying therapy medications, and even less for relapses. Treatment for these diseases is very costly. My daily  disease modifying therapy medication costs over $6,500 per month, and the relapse medication costs $40,000 per treatment.  This far exceeds my and my husband's total income, as my husband is totally disabled from a stroke.  Obviously, very few people can afford these medications, especially when they are fully disabled. There is help available; the drug companies which make these specialty drugs have financial assistance programs that allow the patient to receive the drugs at low cost or for free. HOWEVER, PEOPLE WHO ARE ON GOVERNMENT-ASSISTEED PRESCRIPTION PLANS SUCH AS MEDICARE PART D OR MEDICAID CANNOT RECEIVE THIS HELP.  A provision of the Social Security Act designed to prevent Medicare fraud also makes it a felony for a drug company to directly assist a patient financially if that patient has a government-assisted prescription plan, such as Medicare Part D or Medicaid. YOU CAN HELP!  PLEASE LET CONGRESS KNOW THAT IT MUST AMEND THE SOCIAL SECURITY ACT TO PERMIT DRUG COMPANIES TO PROVIDE PATIENTS WITH RARE DISEASES WITH DIRECT FINANCIAL ASSISTANCE SO THAT THEY CAN GET THEIR LIFE-SAVING MEDICATION!!!

Susan Dolin
51,841 supporters