67 posts in the category “Media Coverage”

We the Patients: New PatientsLikeMe poll finds a unified voice on a U.S. health care plan

Posted June 14th, 2017 by

Repeal? Replace? Revise? While politicians have spent months debating the details of a U.S. health care plan, a recent poll of 2,755 PatientsLikeMe members has found that patients are largely aligned about components of a strong plan for the country.

 

“Despite the partisan divide in Congress about what should be included in a health care plan there is a singular voice in patients, who are agreed across party lines on the essential foundation for any plan.”

— Sally Okun, PatientsLikeMe’s vice president of Advocacy, Policy and Patient Safety

 

Patients with a variety of conditions and from all 50 states (plus the District of Columbia) participated in the poll May 4-9. The poll launched on the same day that the U.S. House of Representatives voted (217 to 213) to narrowly pass the American Health Care Act (AHCA, sometimes nicknamed “Trumpcare” or “Ryancare”), which would repeal much of the Affordable Care Act (ACA, or “Obamacare”). The AHCA bill is now with the Senate for deliberation, revisions and possibly a vote in the coming days.

Here are some highlights from the poll’s findings and the latest trends in patients’ opinions.

PatientsLikeMe ACA patient poll

The new (May) poll was a follow-up to a January 2017 poll where PatientsLikeMe members weighed in on the ACA/Obamacare. Comparing the responses of those who took both the January and May polls, patients are increasingly in favor of modifying rather than replacing the ACA/Obamacare. Fewer patients believe the ACA “needs a major overhaul” or should be “totally eliminated.”

The 7 must-haves

Patients speak out on health care law

Patients are united — 95% or more of respondents agree that these elements should be included in a national health care plan to “provide essential help to the most people.”

Should states have a choice?

Nearly half (48%) disagree that states should be able to “opt out” of parts of a national health care plan while more than one-third (35%) agree with it. But only 22% agree that their own state should opt out.

Patients speak out on health care law

The strongest opinions about opting out were split along party lines, with more Democrats than Republicans believing states should not be allowed to opt out.

Take action: How to raise the patient voice in 3 steps

Want to share the patient voice with your members of Congress? Click here to go to a “Take Action” page with 3 simple steps to spread the word about the poll results and add your own perspective.

 

“Our hope is that by amplifying the voice of those with the most experience with our health system, we will influence the Senate to construct the best plan for all Americans.”

— Sally Okun

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“Our countries have come together, but our people have not”: PatientsLikeMe’s Margot shares her story

Posted May 26th, 2017 by
The 2 Sides Project

Margot visiting the location where her father’s plane may have crashed in 1966. Photo courtesy Istrico Productions.

Margot Carlson Delogne is the Vice President of Communications at PatientsLikeMe. She is also the child of an American soldier lost at war.

This Memorial Day we wanted to show how she’s working on her own healing process, but also repairing some of the divide left in the aftermath of the Vietnam War. In December 2015, Margot, along with five other grown sons and daughters of American fathers who were lost in the war, travelled to Vietnam to confront the painful history of the parents they’d lost and to meet face-to-face with grown Vietnamese children who had also lost parents in the same war, but on the opposite side. The journey, named The 2 Sides Project, also allowed the group to visit the locations where each their fathers had fought and died, an experience that left Margot “changed forever.”

“My father’s plane went down 200-300 meters from a bunker that had been his target,” Margot says of her father, Air Force Captain John W. Carlson, who was shot down in December 1966. “We looked at online maps before we went and they showed an odd line of trees along the edge of a road, and exactly 200 meters from that, another set of trees that looked different from the rest…So we went to that area and got permission to walk toward the spot. One of the other American sons on the trip, Ron, watched his GPS and reported how close we were every few steps. He stopped me when his map said 200 meters and pointed in front of me. I looked and saw a crater. I asked Ron if its shape and size were natural and he said no, he didn’t think so. So, I walked into it and sat in the center. That’s where I held my father’s service. I read messages from my sister and my mother and played a favorite song of my father’s, Greensleeves. Margaret, a fellow airman’s daughter on the trip, helped me read the poem High Flight, by John Gillespie Magee, Jr. I climbed out of the crater and left, a little lighter than before.”

The 2 Sides Project

Margot sitting in the crater where she held her father’s service. Photo courtesy Istrico Productions.

In the same trip, Margot and the group also met with twenty Vietnamese sons and daughters who were children of parents lost fought in the war on the opposite side. Their meeting, according to Vietnamese officials, was the first formal one between children whose fathers died fighting on both sides of the war.

Mr. Xiem, 66, took part in one of the historic meetings, sharing with the group that his father had been killed by American bombs in 1965, and two years later his school was bombed by an American aircraft killing 33 students at 1 teacher. “When I was informed that I would meet with The 2 Sides Project and interact with children of U.S. soldiers killed in the Vietnam War, I began to think a lot,” Mr. Xiem said. “My feelings gradually changed from hatred and resentment to empathy and pity for the children of American soldiers killed in the Vietnam War. When I came to the meeting, I saw the lack of confidence, the anxiety on their faces…I witnessed their tears. And at that moment my hatred seemed to melt away, leaving only sympathy.”

The 2 Sides Project

Mr. Xiam wearing The 2 Sides Project pin, standing with Ron Reyes, an American son. Photo courtesy Istrico Productions.

The entire journey, which has been covered by the New York Times and the Washington Post, was documented in film by Anthony Istrico, Director and Founder of Istrico Productions, and premiered at the GI Film Festival last night. Three members of the Vietnamese group joined Margot and the five other American sons and daughters for the premiere – watch the trailer here. They also visited the Vietnamese Embassy and the Vietnam Veterans Memorial, along with a number of other cultural activities, and ABC News was there to cover their journey.

The 2 Sides Project

The American sons and daughters, from left to right: Margaret Von Lienen, Ron Reyes, Margot Carlson Delogne, Mike Burkett, Susan Mitchell-Mattera, Patty Loew.

When she presented the idea of the 2 Sides Project to the Vietnamese government, the official’s reaction amazed her. “He looked me in the eye and said ‘our countries have come together but our people have not, and I think your project will help. We will support you however we can.’ That’s when I knew this was going to become a reality.”

In her own way, Margot is working to mend the rift between the two countries the best way she knows how, communication. To read updates and stories about their journey, visit the 2 Sides Project website .

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