409 posts tagged “PatientsLikeMe”

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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Going global for World MS Day

Posted May 31st, 2017 by

It’s World MS Day and this year we checked in with the global MS community to see how members around the world are living with MS. Here’s what they had to say:

 

 

“MS is very rare in India. I’m from North India, known as Kashmir, a very beautiful place and it’s rightly known as paradise on earth. For me living with MS is like dying every second in my crippled life. Imbalanced walk in MS really sucks. Shaking of arms or very poor pen grip in my hands makes me feel pity on myself. I don’t think that staying positive works. I had to leave my engineering studies and a government job because of it. Unfortunately, I can’t let others feel what I or my body feels for myself. I can’t afford the life-long treatment for an incurable disease like MS as I’m an idle cripple.”

 

“I am 50 years old and live alone with severely advanced SPMS. While my MS has progressed very quickly, since I have accepted I need care 22 months ago, the government has been EXTREMELY slow to catch on how desperately in need of care I am. I have [had] to fund most of my care in order to stay out of a nursing home, and tearing through my savings at a terrifying rate. You are living in Australia when you are paying taxes, but somehow living in a third world country when you are disabled. Neglect was not what I expected from MY country, and I feel ashamed of Australia.

There is no problem with people’s attitude towards disabled people, except of course, they can be totally naïve about what they can’t see – so being in a wheelchair and looking normal, they are likely to think your only problem is your legs. Stays in hospital for non MS conditions is a nightmare – inadequate staff, lack of equipment for the disabled and very poor knowledge and understanding by staff. You are a ‘fish out of water’ and not catered for.”

 

“Life with MS in the US is a challenge but not without its upsides. If you have to have an advanced form of MS that makes you stand out to innocent bystanders (an abnormal walking gait, dependence on mobility devices, a noticeable tremor, etc.), you may as well have it in the United States. Despite drawing reactions from generous & heartening to pitying, hostile or demeaning, the only unconquerable obstacles to leading a totally fulfilling U.S.-based life with MS would be the ones in your own head and heart.

My two biggest “life hacks” for living with MS in the U.S. have been: (1) equipping myself with a seated Segway: puts me at the same height as the people I’m “walking” with, eliminating the social barriers to conversation; and (2) perfecting techniques for ‘teaching’ able-bodied others how they can respond to my disability in more respectful and productive ways.”

 

“I think that living with MS in Italy is like everywhere else. If you are able to manage the disease, you can live in any part of the world. Of course, social care is important. In Italy, under the National Health System and Social Care System, depending on the severity of the condition, people with disabilities may receive free medications, diagnostic tests and aids such as a wheelchair, cane and diapers. As the National Health Service has become more and more privatized and run like a business, care isn’t properly delivered and the system does not work has it should. Personally, I stay away from hospitals, doctors and so on.

Disabled people are entitled to a reduction in Value Add Tax, from 22% to 4%, for items such adapted vehicle, or to adapt the house. In Italy, there are naturopaths and many traditional medicine doctors who follow a holistic approach. The historic town centers that make Italy beautiful have plenty of architectural barriers, but there are more and more improvements. I think Italy is a good place to heal.”

 

“There’s very little MS in Mexico so [doctors are] very interested in my previous treatments, how effective they are and how I manage my own illness. Seeing doctors in Mexico is very affordable. If I can’t get to a doctor, they will come to me for a modest fee of $20.00. There’s no time limit on how long my appointments are. They spend as much time with me as they think necessary to get a complete understanding of my medical issues.

I haven’t experienced any stigma associated with my illness. On the contrary, they’ve all been understanding of my limitations and very helpful. I never have to wait to see a doctor. Can see one the same day that I need to. They go out of their way to accommodate their patients. I’ve lived in Asia, the Caribbean and Mexico and have gotten treatment. The best medical treatment I’ve ever gotten has been in Japan and Mexico. Overall, I love the medical [care] I get here in Mexico. I still have to see a primary in the US once a year. I have an awesome doctor, dentist and therapist here in Mexico that I wouldn’t trade for anything.”

 

“My MS journey began in 1993. I experienced minimal symptoms for 8 years but then a progressive loss of mobility over the last 16 years leaving me wheelchair bound at 67. I am however fortunate to live in Australia which has the reputation of having one of the best systems of medical care in the world provided by the Government’s Medicare Scheme.

In addition to Medicare, Private Health Care [coverage] is available albeit at a cost. Government also [subsidizes] the majority of MS treatments/drugs, which most people would be unable to fund themselves, and has recently introduced a National Disability Insurance Scheme for qualifying Australians. Having lived in Fiji and Papua New Guinea for 9 years during the early 2000’s and continuing to travel world with the help of my husband, it is not hard to state that Australia provides some of the best medical and physical facilities for disabled people.”

 

“I moved to St. Croix from Maine 10 years ago after vacationing here for about 40 years. As it’s an island most everything costs more because it’s shipped here from America. We have a Government-run hospital that struggles to provide basic healthcare due to meager funding and uncompensated care and a lack of specialists. There is access to neurologists. Private health insurance isn’t available unless provided by an employer. In my observations, there is little stigma associated with having a chronic disease or being disabled on St. Croix. The people are generally kind, helpful and friendly. Strangers are always willing to help with doors, reaching or picking items unlike my experience in my home State of Maine.

For me the climate, culture and my little house is nearly perfect for being outside and trying to stay active as I move like an old stick man and have more pain in temperatures below 50* F. The life hack moment that I experienced about a year after I was diagnosed generated from the thought, “If now now then when?” Being in “the now” became my focus. This led to moving here, getting a job and living with being bigender. My biggest challenge aside from negotiating the 300-year-old streets and sidewalks is to actively be as healthy as I can. I eat a plant based diet, exercise, and use alternative treatments like meditation, Ayurveda, Medical Cannabis and avoiding stress.”

 

 

“Having MS is difficult. As one’s mobility and senses get affected, it gets a bit challenging to move around independently, going to work and just keep one’s morale up. But with all of this, one thing in particular that I’ve noticed in my case (I’m a working professional in Mumbai, one of the most populous cities in India) is that, people everywhere are extremely sweet, polite and courteous to me. Which is really helpful as India has a lot to do (in terms of facilities and policies) to become more sensitive to Differently Abled People (DAP). But the helpful attitude of people more than makes up for lack of facilities.”

 

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