Social Security, Medicare and Obama-care: The Real Story

When my daughter announced that she’d received a small scholarship for the college of her choice, and that I’d pay for the remainder, I had two simultaneous thoughts: I can’t afford it, and it has to be done. Decades ago, When America began providing guaranteed income and medical care for the elderly, we faced the same dilemma: We can’t afford it, and it has to be done. At the time, Republicans dutifully warned of the cost, pointing out that entitlement programs for the elderly would grow out of control. They were right. Costs for Medicare and Social Security spiraled, probably more from the sheer fact that our population is aging, rather than mismanagement, but is that the whole story? Not really. The real story is that America did the right thing. We took proper care of the men and women who made sure the world wasn’t ruled by Nazis, who built our highways and schools and factories, who gave us TV and movies and modern medicine. The cost for such humanitarian extravagance was – and indeed continues to be – breathtaking, but in the end, that doesn’t matter. We’re a civilized nation, and we don’t let our seniors spend their final years in Dickensian squalor.

But there’s more. America has just decided that we won’t let citizens hit by catastrophic illness wither away out of sight. We won’t tolerate breadlines and homeless shelters for people who need appendix surgery when they find themselves in between jobs. We decided that such indifference is not American, and for such a decision, we should be right proud of ourselves. So can we afford to offer such a benefit to our citizens? Perhaps not. Is Obama fibbing when he says all this can be done fairly cheaply? Almost certainly he is. We can hope that having a healthier working force will lead to increased worker productivity, which in turn, will decrease budget deficits. And yes, America enjoyed a Clinton-era budget surplus after the dark, recession-ridden years of Bush Sr, but there’s no guarantees we’ll see that again. Honestly, my guess is that we younger people will get 70 cents for every dollar we put into these dubious national kitties, and probably less. Of course I’m not pleased, but I don’t want to live in a country that lets its citizens just go off in a corner and die. So with apologizes to Guns ‘n Roses, this is not “the Jungle,” it’s America, and I’d prefer to remain proud of it, even if it means less money in my pocket.

Danny Doyle

562 338 1374

Clinical Trials for Rare Disease Patients – Legislation needs your support!

We wanted you to be aware of pending Federal legislation that may be significant for you and for our rare disease community. In June, legislation that enables individuals with rare diseases to participate in clinical trials without losing eligibility for public healthcare benefits was
sponsored by Senators Ron Wyden (D-OR), Christopher Dodd (D-CT), Richard Durbin (D-IL), James Inhofe (R-OK), and Richard Shelby (R-AL), and Representatives Edward Markey (D-MA) and Cliff Stearns (R-FL).

Current law prevents many people who receive Supplemental Security Income from accepting research compensation because it makes them ineligible to receive government medical benefits. This penalty stops significant numbers of people with rare diseases from participating in clinical studies.

The 2009 legislation is supported by over 100 patient support and advocacy groups, including the Children’s Rare Disease Network. A letter sent to Representatives Markey and Stearns reads, in part:

“The undersigned organizations, representing millions of Americans with rare and genetic conditions, strongly support H.R. 2866, the Improving Access to Clinical Trials Act of 2009. We appreciate your efforts to remove the regulatory barrier that prevents Social Security beneficiaries from participating in clinical trials that provide compensation. The fear of losing Medicaid coverage is a strong disincentive for Social Security beneficiaries to participate in these clinical trials.

This problem is a barrier for people who wish to participate in clinical trials. For example, a high percentage of people with cystic fibrosis (CF) are needed to enroll in the large number of CF clinical trials in the pipeline, but many CF patients who are on Social Security cannot participate
because of this regulation. With the efforts to develop new therapies to treat more disease, it also could impact 30 million Americans affected by one of the nearly 7000 known rare and genetic conditions.”

Please see http://www.govtrack.us/congress/bill.xpd?bill=h111-2866 for current status of the legislation and a list of current co-sponsors. If you feel you can, contact your representatives and senators and let them know you support this bill. Thank those who have already signed on and encourage those who have not yet signed on to do so.

Their telephone numbers can be found at:

http://www.usa.gov/Contact/Elected.shtml.

Thank you for your support!
Children’s Rare Disease Network