3 posts tagged “congress”

Lupus Awareness Month: Lupus Warrior Jeanette recaps her D.C. advocacy trip

Posted May 3rd, 2018 by

In honor of Lupus Awareness Month, meet PatientsLikeMe member Jeanette, who recently traveled to the U.S. Capitol to advocate for lupus research funding. (Psst — here are some ideas on how to “Go Purple” this May and raise awareness of lupus!)

“I try to help the world,” says Jeanette Alston-Watkins (JeanetteA6872). The full-time working mom of two was diagnosed with lupus in 2005. She’s on the 2018 Team of Advisors (catch a quick video about her here) and is a passionate advocate for the Lupus Foundation of America.

Lupus Advocacy Summit recap

Jeanette recently attended the Lupus Foundation of America’s 2018 National Advocacy Summit in Washington, D.C. for the second year in a row. What happened at the summit? Take a peek at the agenda and read on!

“We met many young Lupus Warriors from around the country and they told us their stories and their fight with this disease,” Jeanette says.

On Day 1 of the two-day summit, Jeanette and other advocates heard from lupus researchers and drug developers about clinical trials for lupus treatments, particularly for childhood lupus and lupus nephritis (PatientsLikeMe has a Clinical Trial Finder where you can search by condition, location and more). Attendees also learned advocacy tips they can use year-round, practiced telling their personal stories and prepped for meeting with members of Congress to rally for lupus resources.

On Day 2, they converged on Capitol Hill to meet with legislators and make the case for lupus funding.

The “ask” from Congress

Last year, advocates like Jeanette helped secure $13 million for lupus research and initiatives. This year, lupus advocates asked U.S. Senators and Representatives for another annual investment in federal funding for lupus. Specifically, they’re seeking:

  • $7 million for the National Lupus Patient Registry at the Centers for Disease Control and Prevention (CDC). This helps the U.S. keep tabs on the national impact of lupus (in terms of cost and quality of life), and supports programs for patients and healthcare providers.
  • $2 million for the National Lupus Training, Outreach & Clinical Trial Program at the Office of Minority Health (OMH). Officials there help educate and enroll people in clinical trials of possible new treatments. Lupus can affect anyone, but non-white people face a higher risk, so it’s vital to include minorities in clinical trials.
  • $10 million for the Lupus Research Program at the Department of Defense (DOD). Until last year, the DOD’s medical research program (called the Congressionally Directed Medical Research Program) did not have a lupus-specific program. Now that it’s an area of focus (thanks to years of advocacy), lupus researchers are looking to do several specific studies about the condition.

In addition, advocates at the summit asked Congress for $38.4 billion for the National Institutes of Health — a $2.4 billion increase over last year — as a general investment in medical research that all health groups are seeking this year.

“The trip to D.C. was amazing and successful,” Jeanette says, noting that most members of Congress were receptive to lupus advocates’ “ask.” “Great time, great experience and great people all around the country advocating for lupus.”

Let’s hear it for Jeanette and other advocates! Interested in getting into advocacy? On PatientsLikeMe, more than 2,000 members with lupus include advocacy among their interests on their profile — join the community today to connect with Jeanette and others who want to make a difference!

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The 2017 healthcare policy roller coaster ride — and what’s around the bend

Posted December 15th, 2017 by

It’s been a year of wild ups and downs related to the proposed U.S. healthcare policy changes and unknowns around the Affordable Care Act (ACA or “Obamacare”), Medicare and CHIP (an insurance program for kids). See a legislative recap and what could be next.

2017 ACA repeal efforts recap

Having trouble keeping track of what happened this year? You’re not alone. Check out this timeline.

In the spring, we shared the results of a May 2017 PatientsLikeMe healthcare poll, which found that nearly 3,000 participants are largely aligned about components of a strong plan for the country. Right when we announced the poll results in mid-June, the Republican majority in Congress was trying to pass the American Health Care Act (AHCA), which would’ve repealed most of the ACA/“Obamacare.” PatientsLikeMe members shared our poll results – showing the largely united patient voice – along with their personal views in messages to their members of Congress through this Take Action page.

Over the summer, the ACA repeal efforts failed to gain enough support in the Senate, despite a few different attempts (including the Better Care Reconciliation Act, and the so-called “repeal only” and “skinny repeal” bills – see a legislation refresher here).

This fall, Congress turned its attention to tax reform (but has lumped in healthcare changes with less fanfare). In early December, the Senate passed a tax bill called the Tax Cuts and Jobs Act that could repeal the individual mandate of the ACA (the part of the healthcare law requiring that all Americans have health insurance).

The nonpartisan Congressional Budget Office projects that without the mandate, the number of uninsured Americans would jump by 4 million in 2019, on up to 13 million by 2027. Some view the healthcare changes in the tax bill as an attempt at the “skinny repeal” all over again and say that without the mandate, the ACA/Obamacare is at risk of collapse unless Congress takes action to “prop up” the health insurance markets.

Now what? The tax bill is not yet final – now the House and Senate are hashing out differences in their versions of the legislation. Many members of Congress in the Republican majority appear to support the repeal of the individual mandate (one of the least popular parts of the ACA). But most Democrats and several vocal groups like the AARP oppose the tax bill and the possible healthcare fallout.

The estimated $1.5 trillion U.S. deficit increase over the next decade and beyond will “inevitably lead to calls for greater spending cuts, which are likely to include dramatic cuts to Medicare, Medicaid, and other important programs serving older Americans,” AARP says, noting that the tax bill would lead to $136 billion in federal funding cuts in fiscal year 2018, $25 billion of which must come from Medicare. “Such sweeping cuts would be detrimental to an already vulnerable population,” AARP says.

CHIP and VA healthcare programs

Two other pieces in the U.S. healthcare puzzle are also facing risks or changes, but they’ve gotten a lot less news coverage.

The Children’s Health Insurance Program (CHIP) provides low-cost health coverage to kids in families that earn too much money to qualify for Medicaid. In the past, the program had bipartisan support in both the House and Senate, but Congress let federal funding for CHIP expire in September and now states are scrambling to sort out a backup plan for the 9 million children enrolled.

The Kaiser Family Foundation made a map illustrating when states could run out of CHIP funding, with 16 states projected to exhaust their funds by the end of January 2018. They say that children in CHIP may be enrolled in Medicaid, which means states will pay more because the federal match rate for Medicaid is lower than it is for CHIP.

The Veterans Affairs (VA) Choice program could also be in limbo if Congress doesn’t act soon to approve emergency funding to the ailing program, which would expand access to care at non-VA facilities in some cases. VA Secretary David Shulkin is reportedly taking steps toward more privatized healthcare for veterans.

What’s your take on U.S. healthcare policy? Join PatientsLikeMe and discuss your views with nearly 30,000 patients who are interested in advocacy. Also, write to your reps in Congress — patient voices matter.

Editor’s note: On December 20, Congress passed the tax bill, including the repeal of the ACA/“Obamacare” individual mandate. The mandate is still in effect for 2018, so those who don’t have health insurance can still face tax fines. The ACA’s private, individual insurance markets will still be around after the mandate goes away in 2019 but could experience “turmoil” because fewer healthy people will be in the markets, as Fortune reports in their article about what the tax bill’s healthcare changes could mean for you.

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