Nearly 1 million Americans have MS, not 400,000 as previously thought – NMSS Study

A new National MS Society (NMSS) prevalence study estimates that nearly 1 million people have multiple sclerosis in the USA. And that’s more than twice as many as previously thought.

The new estimate is that 947,000 people have MS, compared with the long-accepted figure of 400,000.

Study results were published as “The Prevalence of Multiple Sclerosis in the United States: A Population-Based Healthcare Database Approach”. The poster was unveiled at the recent Joint ECTRIMS-ACTRIMS Meeting in Paris.

The findings are currently tentative, pending completion of a peer review and the prevalence study’s publication in a scientific journal. This could happen as early as next year.

prevalence study

Dr Nicholas LaRocca.

NMSS vice president of healthcare delivery and policy research, Dr Nicholas G LaRocca. has headed the MS Prevalence Initiative since its launch in 2014.

Speaking with Multiple Sclerosis News Today (MSNT), LaRocca said the findings were “definitely not what we expected.”

He told MSNT that the dramatic jump seen in the prevalence study has more to do with methodology than an actual rise in the number of MS cases — though he doesn’t discount that possibility.

“In the past, prevalence was looked at as the number of people diagnosed with a given disorder at a particular point in time. But people with a given condition don’t necessarily have the sort of contact with the healthcare system that would appear to generate a valid diagnostic report.

Prevalence study needs to look at several years

“In order to get an accurate estimate, you can’t look at one point in time or even a year or two, but several years. That really opened up the possibility that the numbers would be much greater than we anticipated,” LaRocca said.

The new NMSS prevalence study involved a working group of up to 20 epidemiologists, statisticians and neurologists meeting virtually every week. It cost $1 million.

It drew on data culled from five national databases. These were Optum, Truven Health Market Scan, Department of Veterans Affairs, Medicare and Medicaid. There was also one regional database, Kaiser Permanente of Southern California.

Together, these databases provided information on more than 100 million people — a third of the US population. Researchers reasoned that nearly all persons with MS, except the uninsured, would be captured in one of these programmes.

However, it does exclude children, Native Americans, undocumented residents, and prisoners. It also misses people who seek treatment at alternative medical clinics rather than through the healthcare insurance system.

The study showed an overall MS prevalence of a staggering 402.8 cases per 100,000 inhabitants. This is a significant increase from 58 per 100,000 in 1976, and 85 per 100,000 for the years 1989-94.

“When you’re talking about the unmet needs of a given population, if you don’t know how large that population is, it’s hard to effectively advocate for them,” La Rocca said. “It’s also important from a scientific perspective.”

Interviewed by MSNT, LaRocca pointed out that four decades have gone by since the last “really solid study” of MS prevalence in the US.

“The last time there was a really solid study of MS prevalence in the United States was 1976. Over time, that estimate was updated, adjusted and corrected, so that after a while it started to fray,” he said.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

Cameron protects NHS, Corbyn says not enough

nhs ttip protest_edited

Accused of failing to include, in the Queen’s Speech, any mention of protection for the National Health Service (NHS) from the forthcoming and controversial European/American TTIP trade deal, UK prime minister David Cameron has agreed to an amendment on legislation before the House of Commons.

The move is to fend off the risk of the Queen’s Speech vote being lost as a significant number of  his own party had already indicated their intention to rebel because the speech did not include a commitment to the NHS.

The amendment is designed to protect the NHS from the terms of the deal but leader of the opposition Jeremy Corbyn has warned that there are still many risks to be tackled.

“I would personally go much further because my concerns about TTIP are not just about the effect on public services but also the principle of investor protection that goes within TTIP – planned rules which would in effect almost enfranchise global corporations at the expense of national governments.

“This protection of the NHS is an important step but it’s not the whole step,” he said.

What is the TTIP? It is the Transatlantic Trade and Investment Partnership. It aims to create a free-trade agreement between the EU member states and the USA.  Boosting the economy is seen as particularly important after the economic crisis but this major issue also has long-term policy implications.

Opinions are sharply divided on both sides of the Atlantic where the debate about the pros and cons of the TTIP remains well entrenched. Many groups are campaigning against this agreement, trying to force decision-makers to change it.

So, let’s take a quick look at the arguments on both sides.

The main advantages that the TTIP may bring to the US and EU are that it will:

  • Boost the US and EU economies;
  • Create new business and trade opportunities on both sides of the Atlantic;
  • Provide an opportunity to set common standards and similar regulations that may facilitate the action of companies;
  • Remove of some market barriers and promote the free-market;
  • As a consequence of the removal of tariffs, reduce consumer prices of many products.

But, unsurprisingly, opponents view things differently. They warn that:

  • The new common standards will probably be lower than those previously existing (mainly in Europe);
  • The new investor-state dispute settlement (ISDS) procedures may infringe principles of sovereignty and, in cases, go against the democratic rules of countries;
  • Since companies may sue governments and officials, the latter may become more cautious and bureaucratic to avoid legal troubles;
  • The lack of transparency during the process of negotiations reduces accountability and the capacity of citizens to understand its potential impact;
  • In some regions, where the industry is less competitive, many jobs may be lost.

 

Crazy law to control use of public bathrooms

restrooms

Discrimination is illegal throughout the majority of countries although there are notable exceptions. As an admittedly broad statement, discrimination is more likely in those places with poor records of human rights.

In general terms, it tends to be accepted that we must not discriminate on the basis of race, gender, religion, age, physical size and so on.

But, and it is a big but, the United States of America falls down in the pursuit of everybody having equal opportunity and equal rights. And the reason for that is because each of the country’s 50 states can pass any law it likes as long as it does not contravene federal law or the constitution.

That is how the state of North Carolina now has a controversial and widely denounced new law relating to discrimination including the use of public restrooms or bathrooms.

An emergency session of North Carolina’s General Assembly passed the House Bill 2 (HB2) – or the ‘bathroom bill’ – on March 23 and Governor Pat McCrory signed it into law that same night.

It made the state’s law on antidiscrimination – which covers race, religion, national origin, color, age, biological sex and handicaps – the final word. Meaning cities and local governments can’t expand ‘employment’ or ‘public accommodations’ protections to others, such as on the basis of sexual orientation or gender identity.

Minimum wage also falls under the state’s antidiscrimination law, so this law means local governments aren’t able to set their own minimum wages beyond the state standard.

In reality, the ‘Bathroom Bill’ was designed to stop people of the LGBT communities from using bathrooms appropriate to their perceived gender. Instead, they are required to use those of their birth gender – although how that is to be enforced is not clear. Will everyone who appears to be a woman be required to prove they are physically a female, or show a birth certificate, before being allowed into a public bathroom? It is all too silly for words.

Now, the law is being challenged as being possibly unconstitutional and in contravention of federal anti-discrimination legislation. It’s a mess.

What is even more funny is that the new law is civil not criminal. There is no risk of arrest if someone ignores it.

 

British Euro vote campaign officially gets under way as US presidential hopefuls face New York primary

euro vote

As electoral campaigns go, the official 10-weeks allowed for the UK public to decide which way to vote in the referendum on Europe is nothing when compared to how long it takes for the USA to choose a president.

The four main contenders for the two party nominations for president announced their candidacies from March to June 2015 – that’s as long as 20 months before the eventual November 2016 polling day. Of course, that includes the campaigns leading up to the two party conventions in July – but that still leaves a final party versus party campaign of some 15 weeks.

In comparison, UK general elections that choose the government, and so the prime minister, have a final campaign time of less than six weeks.

So, as the presidential candidates prepare for their New York state primaries on Tuesday (19), the British referendum about Europe officially began yesterday, Friday April 15.

On June 23, British voters are being asked to choose whether or not they wish the country to stay as a member of the European Union. The ballot paper question will read:

Should the United Kingdom remain a member of the European Union or leave the European Union?

And voters will be asked to choose between Remain a member of the European Union or Leave the European Union.

Of course, the Remain and Leave campaigners have been making their points of view known for months but, with the official campaign now under way, with the lead campaigns designated as Britain Stronger In Europe and Vote Leave.

However, all is not as it should be with the Leave.EU group claiming it should have been made the lead leave group, that the criteria were not followed correctly and that it is going to seek a judicial review.

If that turns out to be the case, it could mean that the referendum might be delayed by weeks if not months.

And that is not the only problem. There is a separate legal action in the works. Lawyers for expat pensioner Harry Shindler have said his judicial review against the UK’s expat voting ban will be heard in the High Court as planned. His lawsuit is on behalf of all British expats who have lived abroad for more than 15 years and so are denied votes by a UK law that David Cameron’s government is committed to repeal – but not in time for the referendum.

An exact date for the hearing has not yet been set, but should the judicial review be successful, the government will be forced to rush through legislation allowing disenfranchised British expats to vote on June 23. According to Richard Stein of law firm Leigh Day, the government has time to change the law and empower long-term expats in the EU to vote on a matter which will seriously affect their chosen lifestyles.

Putting those two legal matters aside, and the time it would take to register all the extra voters if Mr Shindler is successful, former Labour chancellor Alastair Darling has accused Leave campaigners, who are calling on the money spent on EU membership to be pumped into the NHS instead, of “playing with fire” and peddling a “fantasy future”.

Polls suggest the referendum is currently too close to call, although we know that much can change in the next 10 weeks.

 

Flat rate universal basic income plan for everyone whether in work, unemployed or with disabilities

ubi swiss ubi posterSwiss to vote on UBI on June 5.

Several countries around the world are talking about the idea of introducing Universal Basic Income (UBI), not to be confused with Universal Credit which is being introduced in the UK to replace several means-tested welfare benefits.

Universal Basic Income is where the government pays everybody a set amount, whether they work or not, in place of means-tested benefits. Of course, the incentive to work is still said to exist as most people will want to have more money than paid by UBI.

On June 5, Switzerland is holding a referendum of its citizens that, if successful, means it will become the first country to provide universal basic income. They will be voting on a plan that could see all adults receive about 2,500 Swiss Francs (approximately £1,700; $2,460) a month, with children receiving 625 Francs (about £445; $615) for each child. There will be no additional disability benefits.

The Swiss federal government estimates that the proposal will cost around 208 billion francs a year and the Swiss parliament has called for voters to reject the proposal with all parties united against it. Only 14 MPs supported the basic income initiative. One MP described the initiative as “the most dangerous and harmful initiative that has ever been submitted,” mentioning the risks of immigration, disincentive to work, and that the basic income proposed would not be financially feasible.

The Federal Council, Switzerland’s executive branch, also recommended its rejection, noting that UBI would cause low-paid jobs to disappear or be transferred abroad and would send women back to house work or care work. They said that implementing the initiative would also raise taxes and weaken incentive to work.

To understand how this proposal has come so far despite opposition from the government, you need to know that Switzerland has a form of direct democracy alongside its Parliament. Citizens simply have to gather 100,000 signatures calling for a vote on a proposal, and a ballot must be held with its result binding.

There have been UBI-type policies and experiments in both India and Brazil that have suggested that, contrary to fears about ‘welfare sapping people’s initiative, a basic income might actually increase people’s appetite for work. It seems to increase their sense of stability.

In the Netherlands, in the city of Utrecht, there is a pilot UBI-ish scheme whereby people on benefits are paid unconditionally.  Other Dutch towns and cities look set to follow Utrecht’s example. Finland has plans to pilot an even more ambitious kind of basic income.

UBI ideas have been suggested in other countries, including both the USA and UK. So far, however, no firm proposals have been put forward in either nation.

 

Trump ‘scary’, Hillary ‘a liar’ – pick your US President

DJT_Headshot_V2_400x400 HCFront runners: Republican Trump and Democrat Clinton.

Presidential hopefuls in the race to become the Republican party’s candidate in the USA presidential election may have been reduced to three but it is quite possible than none of those three may be the eventual nominee as chosen by the party’s convention.

And, if that seems to make a complete nonsense of the whole system of primaries and caucuses … well, yes it does.

However, if no candidate gains an overall majority of pledged delegate votes in time, the convention will become contested and then, it seems, anything can happen. The chosen candidate may, in fact, be none of those involved in the primaries and caucuses.

Does that strike you as crazy?

Over in the Democrat camp, former first lady, former senator and former Secretary of State Hillary Clinton has amassed a great deal of delegate support so far but, at the moment, she has not gained enough and rival Senator Bernie Sanders has pulled off some remarkable primary wins to keep up the pressure.

Her biggest problem seems to be her reputation. Because of the controversy surrounding her using her home email server while Secretary of State, she is seen by a large proportion of voters as being untrustworthy. And that is only one of a number of concerns.

Now, as I am British, I don’t feel qualified to comment about the qualities of those currently seeking their own party’s endorsement. However, my wife Lisa was born and raised in New York City, so here are her thoughts:

Republican:

Trump: “I like the fact that he is not a politician but he could and would quickly become one. His arrogance scares me and I think he is a danger to the USA and the world.”

Cruz: “A senator from Texas with a Hispanic name. There never has been a Hispanic president and I don’t believe he is the right guy to break that tradition. He hasn’t got what it takes.”

Kasich: “Who? Oh yes, the Governor of Ohio. His poor results in the primaries show he is not in the running for anything.”

Bernie Sanders.

Bernie Sanders.

Democrat:

Clinton: “I could never, ever vote for Hillary. She may never have been convicted of a crime but I don’t trust her. Added to that, her well-documented flip-flops on various policies on which she claims to have always been ‘consistent’ show she is a liar. While I’d love to see the USA have its first female president, please let it not be her.”

Sanders: “Probably the safest of any of those still in the race for either party’s nomination. Certainly, the least of all evils.”

Everyone’s vote should matter – but does it?

ballot box

Uncertainty is hanging over the heads of people in so many different countries this year as questions relating to their futures are being decided at the ballot box. Well, they should be.

In the USA, the various Democratic and Republican candidates are fighting through the primary and caucus system to win enough support to win their party’s nomination as candidate in the presidential election in November.

In Europe, there are three important decisions being made: the Irish general election; the UK referendum on whether to remain in or to leave the European Union; and the efforts In Spain to form a government following the December general election that left no party with enough seats to govern alone.

flag USA

Back in the States, there are really only two contenders for the Democrats: Hillary Clinton and Bernie Sanders. Hillary is by far the favourite although her early victories have been close – some decided by the toss of a coin and others through the help of unregistered voters. It seems that not all is as it should be in the States. My wife, Lisa, is American and she is not surprised by the shenanigans. “Votes don’t matter in America. People don’t really choose candidates or the President. Look at the New Hampshire primary; Sanders won 60% of the popular vote but, because of party rules, Clinton won the most delegates; tell me how that is fair or democratic,” she says.

On the other side of the political debate, the Republican fight seems to be only of concern now to three would-be presidents: front runner Donald Trump, Ted Cruz and Marco Rubio. Others still in the race seem to be out of contention. As the campaign heads towards ‘Super Tuesday’, it looks as though Trump may soon be in an unbeatable position to be named as the party candidate.

flag Ireland

Ireland goes to the polls tomorrow, February 26, to elect its new government. Opinion polls point to Fianna Fail replacing Labour as the second largest party. Fine Gael looks set to remain the largest party, just, but with fewer seats No-one is predicted to achieve an overall majority.

flag Spain

Spain’s parliament meets on March 2 in an attempt to install PSOE (socialist) leader Pedro Sanchez as prime minister. To do so, he will need to win the support of the majority of deputies choosing to vote. Some may abstain. If the PSOE leader cannot receive the necessary backing the PP (conservatives) may be asked once more to form a government but  they have already declined once. Should all attempts fail, Spain will go to the polls once more in June.

flag UK flag Europe

The UK faces a vote in the form of a referendum to either remain in the European Union or to leave it, the so-called Brexit. The vote takes place on June 23 and the ‘Remain’ and ‘Leave’ campaigns both have support from politicians in all the main UK-wide parties. This referendum is too distant and the campaign too long to hazard a prediction yet.