GRAND RAPIDS, Mich. (WOOD) — Rachael Lockwood had heard of a “diabetes black market,” but she had no idea of the extent of the network.
“I did not realize the community that was out there,” Lockwood, the mom of three diabetic children said. “I did not realize how many other people are fighting. It’s been good. I don’t feel as alone.”
Three of Lockwood’s children have been diagnosed with Type I diabetes: 7-year-old Cyrus, 12-year-old Brady and 16-year-old Joci.
Target 8 reported in late March that the family drove to Canada to buy a year’s worth of insulin at a fraction of US prices after Medicaid stopped covering the kind the children use.
Within an hour of that first report, we received emails from concerned viewers with advice and offers of help, including one man who regularly receives surplus insulin from the Veterans Administration and wanted to donate it to the family.
“He gave us eight vials of insulin for Brady’s pump. So generous,” Lockwood said.
The story exploded online, too, in part because of the emotional picture of Brady and Cyrus hugging after the 7-year-old was diagnosed in February.
“That picture has been shared I don’t even know how many times on social media. As a result of that, some people have reached out to us,” Lockwood said.
Among those who contacted the family was Jillian Rippolone, who’s a volunteer with T1International, a non-profit that advocates for affordable insulin.
“I realized that (the Lockwood family) is based in Michigan, which I’m also based in Michigan,” Rippolone, who lives in Birmingham said.
Rippolone runs an online trading post via Facebook that allows members to donate and trade unused insulin supplies. Rippolone says she calls it the “diabetes black market” because “that’s where we all go and share our supplies and help people in need of insulin.”
“I have people message me privately, they send me all the donations, I collect them and I have this private Facebook group where people will trade and ask for donations or give a donation,” Rippolone said. “Everyone knows everyone because we talk to each other every single day on social media…. Everything that I have are new supplies, in the boxes.”
When Rippolone learned the Lockwood’s insurance company had denied them coverage for Continuous Glucose Monitors, she was happy to donate to the family three brand new Dexcom monitors plus sensors, which is worth thousands of dollars.
Rippolone, who herself has Type 1 diabetes, noted she wears one on her stomach.
“What’s amazing about the Dexcom is there’s basically no more finger pricks… and (mom) can actually have (the childrens’) blood sugars on her phone and see their blood sugars any times she wants. So this is really going to help that family because it’s going to give the kids some freedom,” Rippolone said.
Lockwood says the Continuous Glucose Monitor is an amazing tool.
“It shows you if their blood sugar’s going up. It shows you if it’s going down. It can alarm you in the night when the blood sugar’s too low. It can wake me up,” Lockwood said.
Meanwhile, the insurance company that had previously denied coverage for CGMs seemed to have a change of heart.
Priority Health, through which two of the Lockwood kids receive Medicaid, contacted Lockwood Thursday to tell her Brady had been approved for a CGM.
“She said your information and the news story that you sent was passed on to the higher ups, whatever that means, and they have approved (a CGM for Brady),” Lockwood said.
After the initial Target 8 story aired, Lockwood sent the link to Priority Health and let them know that we planned to do a follow-up story on the CGM denials.
“We started fighting for a CGM in 2016 for Brady,” Lockwood said.
She cannot say for certain that it was the news coverage that prompted Priority Health’s reversal, though she believes that’s what triggered the change after two denials and two years of pleas from the family and the children’s doctor.
Priority Health could not comment on the Lockwood’s situation specifically due to health privacy laws, but the insurer did send a statement:
In the interest of confidentiality, it’s our policy to keep concerns about coverage and care between ourselves and our members. However, we can share that we always follow Michigan Department of Health and Human Services policies, and we have dedicated doctors, nurses and clinicians on staff who work closely with our members to ensure they have the access to the care and treatment they need. Our member’s health and safety is always our first priority.
The Lockwood family said Medicaid stopped covering the children’s insulin last fall, which is what prompted the trip to Canada to buy affordable insulin.
However, Meridian Health Plan, through which Cyrus receives Medicaid, recently agreed to cover his insulin again.
Medicaid, through Priority Health, had also denied coverage of CGMs for the three kids, though it recently reversed that denial, at least in Brady’s case.
Bob Wheaton, public information officer with the Michigan Department of Health and Human Services, provided the following statement:
The Michigan Department of Health and Human Services is unable to discuss any specific Medicaid case due to confidentiality requirements. Providing health services and coverage to children and adults that promote a healthy, safe and stable environment for them is a top priority of the department.
The Department’s Managed Care Organizations Common Formulary annually reviews insulin product coverage. In 2018, there were some diabetic treatments that were added due to new clinical studies showing increased efficacy and there were some insulin products that were moved to a non-covered status. Individual products that become non-covered are usually a result of either a decrease in clinical efficacy or increase in cost when compared to other products in the same class. Additional information about the Common Formulary can be found on the department’s website at: www.michigan.gov/mcopharmacy. Coverage of insulin continues to be a covered benefit when medically necessary.
Additionally, Michigan Medicaid supports the benefit of continuous glucose monitors, and as such have established policy and provision of coverage of both therapeutic and non-therapeutic continuous glucose monitors. Selection of the most medically appropriate continuous glucose monitor should be determined by the beneficiary in consultation with their physician. Medicaid does not endorse specific brands or type of continuous glucose monitors.
Prior to April 1, 2019, continuous glucose monitors were covered on a case-by-case basis for all ages based upon medical needs though prior authorization. Beginning on April 1, 2019, coverage for all ages is based on medical need. Prior authorization is no longer required for children under age 5 with diabetes if standards of coverage are met. Prior authorization is required for medical need beyond the policy standards of coverage.