Tag Archives: Medical Foods Equity Act

PKU Letter Campaign to HHS Makes an Impact!

There’s some good news to report in the PKU community: the Health and Human Services letter writing campaign–initiated by the National PKU Alliance aimed at ensuring that every state’s essential health benefits plan provides coverage for medical foods–has made a difference. This article, originally published in Congressional Quarterly’s Healthbeat News on Dec. 21, 2012, provides more details about how those comments have been received.

 Patients Bombard HHS With Pleas on Essential Benefits Packages
By Jane Norman, CQ HealthBeat Associate Editor

Congressional Quarterly HealthBeatParents of children with rare diseases, advocates of acupuncture and other individuals are beginning to flood the Department of Health and Human Services with pleas and complaints about which specific services should be included in states’ essential health benefits packages.

Public comments on a proposed rule on essential health benefits aren’t due until Dec. 26, but more than 1,000 responses already have been received, according to the government website where the reactions are posted. Nearly all the comments so far are from individuals rather than organized groups or health business interests, though those groups also are starting to weigh in.

The letters from worried patients, doctors and family members across the country are an indication of the intense interest not just within the health industry but also among members of the general public – many with diseases or chronic conditions – in the outcome of decisions on benefit packages, which will vary from state to state and have a major impact on some people’s lives.

More than 11,000 comments had been filed in response to a bulletin issued on benefits before the rule was unveiled a month ago.

Some writing in are also asking for more time for comments to be gathered, saying that 30 days stretching over the holiday season isn’t enough time for people to digest a 119-page proposed rule and offer input on what should be changed. “Thirty days during the holiday is poor timing,” said an anonymous comment that suggested 90 days instead.

On Nov. 20, the Centers for Medicare and Medicaid Services released its proposed rule (See related story CQ HealthBeat, Nov. 20, 2012) establishing the essential health benefits required under the health care law (PL 111-148, PL 111-152). Non-grandfathered health plans offered inside and outside exchanges must, under the law, include benefits in 10 broad categories of services. State officials are supposed to pick a benchmark plan in their state as a model. HHS included some additional specific details on benefits in its proposed rule, but many commenters want more.

Don Hossler, who didn’t list an address, said in a comment that the federal government should have required that states get public input before naming their benchmark plans, including from groups that advocate for people with disabilities. “I realize there is a short time for a state to conduct meaningful public comment,” he said. “However, grass-roots organizations need to be allowed ‘at the table’ to enhance the decision based on consumer input.”

Dozens of people have written in already asking that coverage of medical foods be included for patients with PKU, a rare, inherited metabolic disorder in which the body can’t process the amino acid phenylalanine. Treatment must be started early in order to avoid damage to the body and involves a special diet, according to the National PKU Alliance.

Aleksandra Pisarek wrote that she is the mother of an 8-year-old boy with PKU who will require lifelong treatment to avoid brain damage. “Failing to ensure coverage for medical foods discriminates against people with PKU based on their disability,” she wrote.

The National PKU Alliance has urged members to write HHS, noting that the decision on medical foods may be left up to each state unless the government requires coverage of medical foods as part of the essential benefits category that covers chronic disease management. “Representatives from the NPKUA recently met with HHS on this issue, and HHS urged us to have as many people as possible submit comments on the new regulations,” the alliance’s website states.

Another group whose members sent many letters to HHS are those who receive or administer acupuncture treatment. Patricia Solomon, a Massachusetts pediatrician, said that “some of my most aware and careful parents seek acupuncture” and other alternative health treatments for their children. She said she was dismayed to see no alternative treatments included in the standards outlined for benefits. “Their value as adjuncts to traditional medicine is becoming clearer,” Solomon said.

Tabitha Silver of New York wrote, “Acupuncture has changed my life. It was the only thing that helped me with depression and pain.”

Stephen Scholle, the clinical director of a nonprofit that serves mental health consumers in Westchester and Rockland counties in New York, said his group provides acupuncture and should be included in essential health benefits, perhaps as part of wellness and preventive care. It helps with stress relief, pain relief and mental well-being, Scholle wrote.

Another commenter, Terri Bukacheski, said she is concerned that rehabilitative services and devices that are required to be provided in one essential benefits category are not well-defined. “Patients that require prosthetic limbs and orthopedic braces require these custom services for a lifetime, and the care must be provided by highly skilled experts,” she wrote. Devices should be clearly defined to include prosthetic and orthotic services, she added.

The time period for submitting comments in response to the “Patient Protection and Affordable Care Act: Standards Related to Essential Health Benefits, Actuarial Value, and Accreditation” rule has passed; however, visit the National PKU Alliance website for more information on how to support future advocacy efforts.

–NM

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Filed under Advocacy, Formula

Billing PKU Formula According To Calories

Here’s something you may not know when it comes to the business of distributing and paying for PKU formula.

After trying the free sample of RESTORE LITE provided to me by Cambrooke Foods, I immediately connected with my clinic to have it added to my formula prescription. Apria Healthcare, which is the medical supply company that processes and ships my formula, called and told me, “We do not carry RESTORE LITE. We carry the regular RESTORE, but not the LITE.” After reporting this news back to my clinic, we decided to try Edgepark, a competitor of Apria Healthcare. What was Edgepark’s response? Not only does Edgepark not carry RESTORE LITE, they cannot carry the LITE because Apria, EdgePark and other “durable medical equipment” companies are reimbursed according to the number of calories in the formula.

PKU formula, Phenylketonuria formula, low-protein diet

The revelation that durable medical equipment companies are reimbursed according to the number of calories in PKU formula provides a whole new meaning to the phrase, “Spend your calories wisely!”

Call me crazy, but billing insurance carriers based on caloric value seems ridiculous, so while my dietician continues to search for an alternative medical supply company from which I can order my preferred formula, I decided to investigate this a little further.

A basic keyword Internet search turned up a 56-page document created by Abbott Nutrition and titled “Medicare Part B Enteral Nutrition Reimbursement Manual, 9th Edition.” Abbott Nutrition, which creates powdered PKU formulas such as Phenex-1 and Phenex-2, created this manual as a way to guide health care suppliers through the process of billing the U.S. federal health insurance program called Medicare. Here’s how the process is explained on page 9 of the manual:

Enteral nutrition formula is billed in “units.” A unit is defined as 100 Calories.

  • Calculation of units: Cal per day ÷ 100 = units per day
  • e.g., 6 cans/day  x 250 Cal/can = 1500 Cal/day ÷ 100 = 15 units/day
  • 15 units per day x 30 days per month = 450 units per month

Sound all Greek to you? Well, it does to me too. It appears that billing formula based on calories is a government-mandated method, but why (if I am not on Medicare) does it apply to me? Do durable medical equipment supply companies decide to apply this method across the board since they are already required to do so for Medicare patients? And what does that mean on a personal level? Do PKU patients now have to decide whether eating healthier is worth what is likely a significant increase in cost?

This way of thinking–whether it originates with the U.S. Government or with the medical supply companies–sounds all too familiar. For years, PKU patients have struggled with medical foods coverage based in large part on the incorrect assumption that a low-protein diet is cosmetic and only for achieving weight-loss.

Despite calorie count, medical formula is medical formula. Period.

If anyone from Cambrooke and/or Abbott Nutrition are reading this blog, I’d love to hear another perspective on this formula conundrum in the comment field below. Hopefully someone can explain why the 100-calorie difference you see between regular RESTORE and RESTORE LITE ultimately determines whether a patient in need receives their medical formula.

–NM

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National PKU Awareness Day: My Wish List for the Future of PKU

National PKU Awareness Day, December 3, Phenylketonuria, National PKU Alliance

We have all heard about specific days, weeks and even months that are set aside in recognition of something special. Today – December 3, 2012 – is the first-ever National PKU Awareness Day. What does that mean for the PKU community?

Here are a couple things to know first about these special time periods of distinction. In the marketing realm, there’s a difference between national days and national awareness days. National days are typically reserved for organizations lobbying for commercial interests such as National Mutt Day on Dec. 2 which reminds potential dog owners to adopt mixed-breed pets. National awareness days, on the other hand, are used to identify health-related issues; some of the more well-known health awareness campaigns being in support of breast cancer and heart disease.

As a rare genetic disorder with no cure, PKU certainly falls within the national-awareness-day category. Receiving a national awareness day distinction for PKU required the support of the U.S. Senate, which unanimously passed the resolution on Sept. 19, 2012. Senators Johnny Isakson (R-Ga.) and John Kerry (D-Mass.) co-sponsored the resolution, and the National PKU Alliance, a coalition of local, state and regional organizations supporting PKU families, undoubtedly played an integral role assisting the two senators as they sought buy-in from their senatorial colleagues.

Receiving national recognition for PKU is rather moving and amidst all the excitement, I couldn’t help but daydream just what this elevated, national platform could mean for PKU. Call this a PKU National Awareness Day Wish List if you like, but here are just a few things I hope will change over the coming years with more attention brought to this issue:

  • More scientists will know of and perhaps be inspired to study phenylketonuria.
  • More funding may be allocated for academic research in support of PKU.
  • Policy decision makers in Washington D.C. will better understand the importance of mandatory newborn screening and may eventually pass the Medical Foods Equity Act.
  • Insurance coverage will increase at both the national and state levels.
  • Any confusion that the PKU “diet” is cosmetic and applies to weight-loss will be eliminated.
  • PKU clinics across the nation will improve thanks to shared best practices and individualized patient care.
  • We may someday gain a better understanding for the differing degrees of severity found in PKU.
  • The list of pharmaceutical drug therapies that are available for the treatment of PKU may increase.
  • We could also see a greater variety of low-protein foods made available to patients…maybe some even available in common grocery stores.
  • PKU patients and their families will experience a greater sense of community.
  • We may improve upon the resources made available to women facing maternal PKU…and ultimately increase the number of successful pregnancies.
  • PKU will have a greater, national identity; one that “adds a face” to what is otherwise an obscure genetic disorder.

I do not think it’s at a stretch to assume that through all of these “blue-sky” goals, National PKU Awareness Day could one day lead to a cure. With that in mind, what other items would you add to this wish list?

–NM

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